My husband Dan had his 22 of 42 radiation treatments today. Today he has been coughing much more b/c the mucous is worse than usual.....I did give him some Robitussin, but wanted to know if I can give him more than the recommended dose on the bottle? It dosen't seem to do much, and he is sooooo miserable. He will cough and gag until it causes him to vomit. I'm going to have him try the squares of gauze between his cheek and gums tonight, but he has never had this before during the day. We are already using a humidifier, so I guess I will have to look into getting the suctioning machine for him. Which I will do tomorrow....but I wanted to see if anyone had any other recommendations for this awful problem???? Thanks,
Michelle G.

Typically the toxicity levels of over the counter medications are 10 times higher than the indicated dosage. I would still check with a doctor or pharmacist first especially if there are contraindictions with other medication(s) that he is taking.

I did a lot of the cough, gag and vomit thing myself - thank God it passes.

Thanks Gary.....I'll check on it! How long after your radiation ended did it begin to improve? Did you notice any difference when the rad tx area was coned down? Even a small improvement would be nice at this point!!!! The coughing just started but it is horrible! Any other suggestions????
Michelle

Michele, make sure Dan sleeps sitting up. This will help keep the mucous out of his throat and cough center. Even with that, toward the end of my treatments and for three weeks after, I was still up every 45 minutes or so to cough, hack, spit, etc. It is just part of the deal. Fortunately, this side effect from rad, which keeps giving for a long while, fortunately this ends. It's ironic, I have difficulty now remembering how bad it was. Dan will get to that point as well. Look what you both have to look forward to. Another thing, try to always have water available to help keep the throat clear. Other than that, try to anticipate the joy of not having to deal with it in a few weeks.

Dear KirkGeorgia: Thanks for the info. I'll see if I can manage to get him to agree to sleeping upright........I wish I could get him to look at this site.....but all he does is sleep....(and cough, spit, hack, and vomit. He FINALLY allowed me to give him extra pillows to elevate his head last night, but still lots of coughing. Up until the other day, he did sip on water, but now his throat is so sore, he dosen't want to do that now. He is taking everything thru the g-tube now, and that worries me, b/c the docs have said, and I've seen on this site, that it is good to keep swallowing even if it is only water. I KNOW that he will get thru this and beat it.......but it sure is tougher than I had ever imagined!!!! I'm still so angry at the damn doctors for misdiagnosing him for over a year.......I guess that's something that I need to heal from, 'eh? If you have any other tips, I'm all ears!!!!

Thanks again for the info!
Michelle G.

Michelle,
I had to drink bottled water ice cold and had to be careful of the brand. Some bured and others didn't. Yes, it is a good idea to keep swallowing if he can.

Take care,
Eileen

Eileen: wow, that is so awful that the water sometimes burns! One of the last days that Dan took the Ensure by mouth, he said that it was burning! Before all of this, we always drank Deer Park bottled water......I believe that was one that Dan was drinking the other day. I hope he can continue to drink some by mouth, but it seems to get less and less every day. Not to mention that NOTHING tastes right to him anymore....just awful! Thanks for the advise!
Michelle G.

Michelle and Eileen,

Many of my worst memories of radiation have faded into the background over the years, but one that sticks with me is that I got to the point where I had to do the "swish and spit" routine to numb my mouth in order to drink a simple glass of water -- absolutely everything burned for a good many weeks.

Cathy

Michelle,
My Dan went for at least 6 weeks w/o being able to talk and even longer w/o eating or drinking anything at all. He used the PEG for everything as nothing would go down...not even a sip of water. He had the PEG for 5 months and then slowly was able to just eat tiny little bits and drink lukewarm water. He also was able to drink Carnation Instant Breakfast some and that had some good calories for him.
God bless and take care,
Debbie

Dear Debbie: Thanks so much for the information.....it sounds like both Dan's experienced very similar problems with eating and drinking....even water. I hope that your Dan is doing well now, and mine will be shortly. Thanks so much for the info!

Take care,
Michelle

Dear Eileen: what were you using for a rinse? Baking soda and salt water? Seltzer? Dan uses the soda and salt water sometimes, but right now, as you say, everything burns and he dosen't want to take anything by mouth. He goes through a horrible ordeal in the morning gagging and coughing up that horrible thick, ropey mucous. Was it the same for you also? I have NEVER seen anything like this......I feel so hopeless when this happens.

Michelle,
He is just beginning to climb the mountain. My radiation side effects continued to get worse until almost a full month AFTER treatment ended. That's why we say around here that radiation is the "gift that keeps on giving". But remember it's also what kills the cancer. I posted in another topic about salt in rinses - some can take it and some will go through the roof in excruiating burning pain (like I did). and, like others here, there was a point where I had to seriously med up or use the morphine and lidocaine swish & spit just to swallow water. Radiation burns and mucositus are very nasty things. Constipation is a major problem with pain meds that will have to be carefully managed as well.

The thick mucous and hacking will last for a while and then one day it will just stop. My wife was really distraught watching me go through this as well. Caregivers actually have it worse than we do because of the helplessness of it all.

I had days that ranged from awful to horrific -I looked forward to the awful days ;-)

It will get better eventually I promise - hang in there. Work closely with your advice nurse - lean on your medical team. Be on the lookout for thrush as well - that will cause a lot burning sensation too.

Dear Gary: Oh my goodness I know what you mean! Dan has had problems with constipation since b4 he was even diagnosed, as he was taking narcotics long b4 due to the intense pain. So we got that worked out early on......Thankfully, Dan can manage the baking soda and salt water rinses, but even with the rx washes, he can not always swallow even water. Thank goodness for the PEG....he hated it, but I don't know what we would do now if he didn't have it!!!! Dan also had thrush the first wk of treatment, so he has been on meds ever since for that one too! WOW, I was hoping beyond hope, that the thick mucous would just "disappear" when the rad stopped.....but in my heart I knew that was most likely not going to happen. That is just so strange, how you say that one day it is just gone! Well, I'm sure waiting anxiously for that day. I know Dan will beat this and get thru it just like yourself and so many of the others, but what a tough road to travel, 'eh? Thanks Gary for the info......I will pass it along to my Italian Prince!

Michelle G.

Gary: I forgot to ask.....did you happen to use one of the suction machines? What are your thoughts on those? I was thinking about asking the RadOnc for a script for one on Monday. Thanks!

Michelle G.

Michelle,
I didn't have one for radiation but had one after the trach surgery and now sure wish I had had one during radiation. It sure beats pulling it out with your hands. My mucous was usually the worst in the afternoon. I rinsed with baking soda only. Everything already tasted so salty I didn''t need any more. I also had horrible thrush and rinsed with Nystatin. It's been a long time, but I think the brand of water your husband is drinking is one that gave me problems. I think I settled on Great Bear. You just might try a few different brands and see if any work.

Take care,
Eileen

I have to laugh a little about the brand of water?!?! I used to work for a company that manufactured water quality testing equipment and most bottled waters are so heavily filtered that there is nothing left in them but practically pure H20. Coors beer advertises that it's made with "mountain spring water" but after they are done "polishing" it there are NO minerals left (the scale would clog their plumbing systems) - it might as well be distilled. Some of the cheaper bottled waters like Safeway brand taste like they came right out of the tap. You can almost smell the chlorine.

I personally couldn't stand the taste of Nystatin, although in the end I had no choice since I exceeded my "lifetime dose" of Diflucan ;-) Diflucan is also much more efficient.

I didn't use a suction machine. Others here have used "Puffs" brand tissue and I am sure that they will share with you the technique.

My mucositus issues were worse in at night and in the morning. If I could somehow get my throat a little cleared early on that would help immensely with swallowing.

I recently read somewhere about a new medication that was recently cleared by the FDA for mucositus. http://www.drugtopics.com/drugtopics/article/articleDetail.jsp?id=107987

or

http://www.drkoop.com/newsdetail/93/522919.html

They gave me a decongestant which helped a little. Stay away from antihistamines they will dry you out too much. I can't remember the name of the stuff - it began with a g Guana????something.

Propping yourself up at night while sleeping probably helped more than anything else.

I know that Dan feels the same regarding the nystatin.....he says that it burns his mouth, not to mention the taste is awful. It's Diflucan for Dan......for now anyway! He is using the Puffs.....We don't own a recliner, so I went today to try and find one while his daughter sat with him! All the Valentine's day shoppers were out, and I just get way to anxious being away from him, so we'll prop him up for yet another night! Dan is also using the guiafenisen (sp?) which is what I believe you are speaking of here. It does help some, along with propping himself up, and using the Puffs and the rolled gauze, I think we are doing everything we can for now, I guess! Thanks also Gary for the link, I will check it out later.......I had heard something similar recently so it may be the same. I'll let you know.

Thanks again!

Michelle, I'm glad you posted. I was about to post on the same subject--mucous. Suddenly in the last couple days, this has become an issue for me. I've finally figured out that I'm not vomitting because of the nausea, but from the mucuous. This is making PEG feeding much more unpleasant. I have 14 days of radiation to go, and know I have to get a handle on this ropey stuff if I'm going to make it.

Any little tips I'm eager to try just to alleviate my problem. Currently, I'm getting up at night just trying to clear my throat out and I've been hitting that bottle rinse of Keopec, Diphenhyd, lidocain and visc(c) and the new Nystatin bottle seems to almost guarantee a full vomit attack. I just wrote down Diflucan to ask the next doc I see if I can have a prescription for that.

Robitussin might help? Even though I cannot drink soda at all anymore, I made notice that if I got a couple sips in me, it did break up some of the mucous. It was sort of a homemade mucous bomb. I'd rather get rid of it, than wait until a full PEG feeding and then be standing at the sink for the next 20 minutes. My radiation doc told me to stay away from the soda anyway because of the "gas" but it's not like I can drink even simple water like I use to.

I'm looking for whatever will get me through the night <Grin>

I know how you feel. The mucous was one of the worst things for me. I used to wake up every 45 minutes or so to spit, cough, choke, etc. It made for a very poor nights sleep. Then work in the morning and no drugs until 5:00 PM or so. But, you can get through it. Just live from hour to hour and before you know it, the rad is over and 3 weeks pass and all of a sudden, it is getting better and better. Hang in there, you are way past half way and there is light at the end of the tunnel.

Brainstorker: Dan did get one of the suction machines last week and that REALLY helped alot after he got the hang of it......not enough hands and when to use it.....I guess it's kind of a skill you have to develop....knowing the exact time to use it. Within a few times, he had it down pat and now uses it on a regular basis. If you get a machine now, you will be slightly ahead in your course of tx from when Dan got his. He has one more chemo (this Tuesday) and 7 more radiation treatments and then he is done.....hopefully for good. Dan's doctor wrote him a script for the machine and the mthly rental was only $1.73! I nearly dropped over right there.....we haven't found ANYTHING that inexpensive since we began this journey! What a deal! The wheelchair rental was twice that much, so I was impressed. I don't know what I was expecting, but the machine is not huge.....you couldn't carry it around w/you, but it fit in a bag! I was expecting something they might have to deliver.......I'm learning so much here! I would certainly recommend one of these.

The robitussin helped Dan somewhat, but we had to stop that last week. Dan was having horrible problems.....he was so weak and very disoriented. He fell several times, thus the wheelchair. In fact, he was diagnosed with delirium. There were some changes in his MRI, but no cancer or stroke, so the docs weren't really sure what was causing these symptoms so they cut out alot of the meds. He has improved now, so I'm hoping it was some kind of weird reaction to the meds. Although the Robitussin did help, I think tiny sips of water helped just as much....the machine has been the biggest help. Kirk.....I'll never know how you worked while going through this.....there is NO WAY Dan could do that in his condition!!!!

Another thing we tried, which was recommended here on the forum, was rolling up gauze pads and placing them in your mouth between your cheek and gums....this really helped to, then we got the machine the next day. Some people say sleeping in a recliner or at least w/your head elevated helped. Dan does use extra pillows which does help some. We didn't have a recliner, but my daughter and her husband came home this wkend and brought back my old recliner that I gave them when they were starting out a few years back. It is great for Dan.....and the price was right, since I'd paid for it some 10 years ago! I don't know though if it has helped or not......and I think the reason I can't tell is that he is just soooooo weary now and ready for the treatments to be over so his mouth can begin to heal along with the cancer! And yes, the light at the end of the tunnel is getting a little brighter everday!

Thanks to all!
Michelle

Michelle,
I didn't have one for radiation but had one after the trach surgery and now sure wish I had had one during radiation. It sure beats pulling it out with your hands. My mucous was usually the worst in the afternoon. I rinsed with baking soda only. Everything already tasted so salty I didn''t need any more. I also had horrible thrush and rinsed with Nystatin. It's been a long time, but I think the brand of water your husband is drinking is one that gave me problems. I think I settled on Great Bear. You just might try a few different brands and see if any work.

Take care,
Eileen

I have to laugh a little about the brand of water?!?! I used to work for a company that manufactured water quality testing equipment and most bottled waters are so heavily filtered that there is nothing left in them but practically pure H20. Coors beer advertises that it's made with "mountain spring water" but after they are done "polishing" it there are NO minerals left (the scale would clog their plumbing systems) - it might as well be distilled. Some of the cheaper bottled waters like Safeway brand taste like they came right out of the tap. You can almost smell the chlorine.

I personally couldn't stand the taste of Nystatin, although in the end I had no choice since I exceeded my "lifetime dose" of Diflucan ;-) Diflucan is also much more efficient.

I didn't use a suction machine. Others here have used "Puffs" brand tissue and I am sure that they will share with you the technique.

My mucositus issues were worse in at night and in the morning. If I could somehow get my throat a little cleared early on that would help immensely with swallowing.

I recently read somewhere about a new medication that was recently cleared by the FDA for mucositus. http://www.drugtopics.com/drugtopics/article/articleDetail.jsp?id=107987

or

http://www.drkoop.com/newsdetail/93/522919.html

They gave me a decongestant which helped a little. Stay away from antihistamines they will dry you out too much. I can't remember the name of the stuff - it began with a g Guana????something.

Propping yourself up at night while sleeping probably helped more than anything else.

I know that Dan feels the same regarding the nystatin.....he says that it burns his mouth, not to mention the taste is awful. It's Diflucan for Dan......for now anyway! He is using the Puffs.....We don't own a recliner, so I went today to try and find one while his daughter sat with him! All the Valentine's day shoppers were out, and I just get way to anxious being away from him, so we'll prop him up for yet another night! Dan is also using the guiafenisen (sp?) which is what I believe you are speaking of here. It does help some, along with propping himself up, and using the Puffs and the rolled gauze, I think we are doing everything we can for now, I guess! Thanks also Gary for the link, I will check it out later.......I had heard something similar recently so it may be the same. I'll let you know.

Thanks again!

Michelle, I'm glad you posted. I was about to post on the same subject--mucous. Suddenly in the last couple days, this has become an issue for me. I've finally figured out that I'm not vomitting because of the nausea, but from the mucuous. This is making PEG feeding much more unpleasant. I have 14 days of radiation to go, and know I have to get a handle on this ropey stuff if I'm going to make it.

Any little tips I'm eager to try just to alleviate my problem. Currently, I'm getting up at night just trying to clear my throat out and I've been hitting that bottle rinse of Keopec, Diphenhyd, lidocain and visc(c) and the new Nystatin bottle seems to almost guarantee a full vomit attack. I just wrote down Diflucan to ask the next doc I see if I can have a prescription for that.

Robitussin might help? Even though I cannot drink soda at all anymore, I made notice that if I got a couple sips in me, it did break up some of the mucous. It was sort of a homemade mucous bomb. I'd rather get rid of it, than wait until a full PEG feeding and then be standing at the sink for the next 20 minutes. My radiation doc told me to stay away from the soda anyway because of the "gas" but it's not like I can drink even simple water like I use to.

I'm looking for whatever will get me through the night <Grin>

I know how you feel. The mucous was one of the worst things for me. I used to wake up every 45 minutes or so to spit, cough, choke, etc. It made for a very poor nights sleep. Then work in the morning and no drugs until 5:00 PM or so. But, you can get through it. Just live from hour to hour and before you know it, the rad is over and 3 weeks pass and all of a sudden, it is getting better and better. Hang in there, you are way past half way and there is light at the end of the tunnel.

Brainstorker: Dan did get one of the suction machines last week and that REALLY helped alot after he got the hang of it......not enough hands and when to use it.....I guess it's kind of a skill you have to develop....knowing the exact time to use it. Within a few times, he had it down pat and now uses it on a regular basis. If you get a machine now, you will be slightly ahead in your course of tx from when Dan got his. He has one more chemo (this Tuesday) and 7 more radiation treatments and then he is done.....hopefully for good. Dan's doctor wrote him a script for the machine and the mthly rental was only $1.73! I nearly dropped over right there.....we haven't found ANYTHING that inexpensive since we began this journey! What a deal! The wheelchair rental was twice that much, so I was impressed. I don't know what I was expecting, but the machine is not huge.....you couldn't carry it around w/you, but it fit in a bag! I was expecting something they might have to deliver.......I'm learning so much here! I would certainly recommend one of these.

The robitussin helped Dan somewhat, but we had to stop that last week. Dan was having horrible problems.....he was so weak and very disoriented. He fell several times, thus the wheelchair. In fact, he was diagnosed with delirium. There were some changes in his MRI, but no cancer or stroke, so the docs weren't really sure what was causing these symptoms so they cut out alot of the meds. He has improved now, so I'm hoping it was some kind of weird reaction to the meds. Although the Robitussin did help, I think tiny sips of water helped just as much....the machine has been the biggest help. Kirk.....I'll never know how you worked while going through this.....there is NO WAY Dan could do that in his condition!!!!

Another thing we tried, which was recommended here on the forum, was rolling up gauze pads and placing them in your mouth between your cheek and gums....this really helped to, then we got the machine the next day. Some people say sleeping in a recliner or at least w/your head elevated helped. Dan does use extra pillows which does help some. We didn't have a recliner, but my daughter and her husband came home this wkend and brought back my old recliner that I gave them when they were starting out a few years back. It is great for Dan.....and the price was right, since I'd paid for it some 10 years ago! I don't know though if it has helped or not......and I think the reason I can't tell is that he is just soooooo weary now and ready for the treatments to be over so his mouth can begin to heal along with the cancer! And yes, the light at the end of the tunnel is getting a little brighter everday!

Thanks to all!
Michelle