I saw in a thread I was reading about keeping all of your questions together in you own thread so here goes. I have a few questions that maybe someone can help me with.

I am a base of tongue patient, stage 4. I have 6 rad treatments left and 1 final dose of chemo tomorrow. I was only taking 800mg Ibuprofen for pain up until a week or so ago when the tongue pain kicked in. They have put me on a patch that makes me feel kinda " weird ". Narcotica have a adverse reaction on me and make me stay awake. What I am wondering here is this, is there a non-narcotic med that any of you may know of ?

I also have just gotten a suction machine for this mucous that I have in my throat. Is there any " tricks " I need to know that may help me keep the mucous out of my throat. The only way I was getting it our was by vomiting it up and , wow, thats painful.

Ok, one final question. What seems to be the best thing for constipation that y'all have had experiences with ? I had a bout with constipation last week and I don't want no part of that again... LOL

Hi, Billy. You've done well so far to manage the pain with non-narcotics, but there almost always comes a point where that isn't enough. I'm taqking a guess that the patch you are on is fentanyl [please correct if that is wrong]. That drug, while tolerated by many people, does weird things to some. My husband could not tolerate it-he had out of body experiences, halucinations, etc.. He did have success with hydrocodone and Dilaudid for pain control during and after rad. The suction machine helped him alot also, as did continual salt and baking soda mouth rinses, and drinking lots of water. Constipation is another major issue and it is pretty much a trial and error thing. It depends alot on how much and WHAT you are able to eat first of all. Are you getting any solid food? Are you getting any fiber?. If not, you may need to try things like prune juice or a medium strenght laxative [with lots of water] to see if you can control it that way. If not, then something stronger [but you may need to wait until the final dose of chemo is over so as not to strain your system too much. AThe last rad treatments and the weeks afterward are likely to be tough, so take good care of yourself. Best wishes, Amy in the Ozarks

Hi Billy, I will address the constipation first because I had alot of trouble with it. My doc suggested Senekot S as a stool softener. It kind of worked until I went on the narcotics. Nothing worked after the chemo, and nothing worked when I used the morphine pills. It wasn't like I felt constipated. I didn't feel anything in my bowels. I finally made this clear to my docs and they said why didn't you say something. I thought I had but that is when they put me on polyethylene glycol and a mild suppository. I needed the suppository to tell my bowels to work. I tried the magnesium sulfate at first but once the sores came up in my mouth there was no way. There is a brand name for the Poly glycol and it is now over the counter. I see it advertised on TV all the time I just can't remember the name of it. You should consult you docs before taking any of these. And you have to keep up your fluid intake. Amy gave you all that advice. It is trial and error. i was almost finished with treatment when I finally got it under control.

I also had problems w/ constipation-the rx Miralax which worked great. I had also tried Senokot S & this worked much better. It use to be available only by rx but I recently saw on a commercial you can get it over the counter. Hope this helps!
Also, as Amy posted the weeks after radiation can be the hardest-not to scare you, I just want to prepare you. Just remember, it will pass & things WILL get better. Stay strong...you got this far.

Thanks for the replies y'all. Constipation is a worry of mine as is the pain in my throat and the mucous. The mucous would have to be the main worry right now because it keeps me up at night and I have a hard time keeping anything down when the mucous is in my throat.

Amy, if you could, please elaborate in the rinsing with salt water and baking soda water. I believe my radiologist told me that rinsing with those two things would bring the mucous up. H also rememnber him saying that Benadryl 5mg would dry it up. Please let me know.

Billy, depending on how your mouth feels, you can dissolve up to a teaspoon [less if that burns] of salt and up to a teaspoon of baking soda in 8 or more oz. of warm water, then swish it around in your mouth and spit it out.If you cannot tolerate the two mixed together, do each individually. You can do this as many times a day as you want. Hopefully it will help. My husband could not take Benedryl-it made his arms and legs "restless". They would not stay still. Another product he had some success with was Rincinol PRN which is over the counter at pharmacies. Another trick we learned here was to keep boxes of Puffs Ultra [kleenex type] tissues everywhere. They are super soft and absorbant and you can "swab your mouth with them.[don't get puffs plus,as they are scented] Another hint, we put a 1\4 cup of mouthwash in the suction machine each time we washed it which helped eliminate odors. Keep going forward, Billy, you are doing well. Amy in the Ozarks

Billy:
I used the salt and baking soda as well. Mixed it a gallon jug at a time (with a tablespoon each of salt and baking soda) and kept it close at hand. For a while I couldn't swallow at all, but I forced myself to swish and spit this mixture. Also, I started using a humidifier about this time as well. I feel it really helped with the dryness in my mouth at night, and might have been more mental than anything, but I think it help the mucous (coupled with keeping my head propped up on three pillows or sleeping in a recliner). I used the humidifier up until about a month ago when it finally croaked and I just went on without one at that point. There's really no easy answer or fix for the mucous situation, you just try to experiment and find the best combination that will help you be as comfortable as possible.
I Also fought not using pain killers. Prior to being diagnosed I was living on Ibuprofen 800mg. at a time just like you, and prior to that I was hard pressed to take an aspirin! Once diagnosed and through surgery I was on different things. When I had to fight the battle again my Oncologist started me on the patch (fentanyl)and it was the best thing I was given throughout my journey. They can lower the dose if it's making you feel weird, but it really delivers a more consistent relief if you can tolerate it.
I used Milk of Magnesia through my tube (It burnt to bad orally) for the constipation which worked better for me than the Senakot and other things the Dr.'s suggested. Hope this information helps. Hang in there as it gets better (even though it's not any fun for a quite some time)

Best Wishes,
Steve

Billy, please read DCS's post on thrush [posted today] it has a great idea about using a water pic aathat might help clean your mouth out. Amy in Oz

Billy has been down for about 22 or 23 hours a day since his last round of chemo Wednesday. He is up long enough to do feedings and meds and of course hack like crazy with all the mucous.

Billy asked me to see if any of you can tell him when the best time might be for him to do the salt water rinses to avoid having all the mucous loosen and hacking all night long?

Also, how do you incorporate the baking soda? Do you mix it with the salt? How often, etc..

Thanks!

Lissy,

Billy and I have pretty much the same Dx and treatment. You just mix the baking soda, salt and water all together. I premixed mine in the morning and when I was to ill to get out of bed my wife premixed it for me. I did the rinses through out my treatment and I really only had a minor problem with mouth sores. The mucous was a problem for me too. I did the rinses at least four times a day and especially after meals to get left over food and boost, ensure, VHC out of my mouth. It really didn't cut my mucous that much but I'm sure it kept my mouth problems to a minimum.

Stay Strong
Tim