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#44607 02-13-2005 11:08 AM
Joined: May 2002
Posts: 2,152
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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


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
#44608 02-13-2005 12:46 PM
Joined: Nov 2002
Posts: 3,552
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Patient Advocate (old timer, 2000 posts)

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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.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#44609 02-13-2005 12:58 PM
Joined: Jan 2005
Posts: 56
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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
#44610 02-20-2005 03:06 AM
Joined: Jan 2005
Posts: 191
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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>

#44611 02-20-2005 08:19 AM
Joined: Apr 2004
Posts: 482
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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.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#44612 02-20-2005 01:42 PM
Joined: Jan 2005
Posts: 56
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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! wink 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
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