Best short tips for handling chemo/RT
Comments
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Mouthwash with lidocaine
When the mouth, tongue, gums start hurting, get a suitable mouthwash with added lidocaine (0.1%). I don't know if this is commercially available, my ENT clinic in the hospital made up its own, but I imagine one can get it made up if you have a prescription. You need the mouthwash to keep your mouth clean but the extra lidocaine is a light anaesthetic which helps keep the pain levels down. You can gargle as frequently as you want and the lidocaine goes straight to the bits that hurt with instant relief. Not to be swallowed however and its hard to get it to the back of the throat. But I wish I had had this stuff earlier than in the 6th week of treatment!0 -
Supplementary feeding by port or PEG
Don't wait too long and don't lose too much weight before you start supplementary feeding methods. I lost 30 pounds before action was taken, which I needn't have done. If you have a port, you can of course use it to have intravenous feeding, but this is a bit more complicated as (a) you have to maintain good sterile conditions at all times when changing feeds and probably therefore need homecare assistance, and (b) it takes longer to "download" the food. My 2 litres (3 1/2 pints) a day took as much as 16 hours which ties you down a bit more than necessary.
Getting a PEG fitted is no more complicated than the port, and as it means you can deliver direct to the stomach, (a) you don't have to be so careful about sterile surroundings, and (b) one you've gotten used to it, you can take the food on board much more quickly than via a port. You can also feed yourself "on the road" (literally!) if necessary. And not least: once you have finished chemo, you don't need any more needles in your port!
Some people who are expecting problems with feeding - and who doesn't with radiotherapy to mouth/throat?! - get a PEG fitted before they start. I wish I had. For 6 or 7 weeks I was on port feeding. As I was not otherwise able to eat (or even hardly drink) anything, my stomach must have shrunk to the size of a walnut. Certainly felt like it. This meant finally starting with PEG feeding was a bit more difficult than if I had started more promptly.0 -
Baking soda to deal with a metal taste in the mouth
I am not sure if it was from chemo (Cisplatin) or RT, but in the early stages I got a horrible metal taste in my mouth shortly after chemo. (Maybe I had it later too but got used to it!).
Gargling with a solution of baking soda/bicarbonate of soda (NaHCO3) seemed to help a lot. Do not confuse baking soda (NaHCO3) with other soda forms though! Bicarb is a multiuse substance for all sorts of useful things - see http://en.wikipedia.org/wiki/Sodium_bicarbonate0 -
IV?rasselas said:Supplementary feeding by port or PEG
Don't wait too long and don't lose too much weight before you start supplementary feeding methods. I lost 30 pounds before action was taken, which I needn't have done. If you have a port, you can of course use it to have intravenous feeding, but this is a bit more complicated as (a) you have to maintain good sterile conditions at all times when changing feeds and probably therefore need homecare assistance, and (b) it takes longer to "download" the food. My 2 litres (3 1/2 pints) a day took as much as 16 hours which ties you down a bit more than necessary.
Getting a PEG fitted is no more complicated than the port, and as it means you can deliver direct to the stomach, (a) you don't have to be so careful about sterile surroundings, and (b) one you've gotten used to it, you can take the food on board much more quickly than via a port. You can also feed yourself "on the road" (literally!) if necessary. And not least: once you have finished chemo, you don't need any more needles in your port!
Some people who are expecting problems with feeding - and who doesn't with radiotherapy to mouth/throat?! - get a PEG fitted before they start. I wish I had. For 6 or 7 weeks I was on port feeding. As I was not otherwise able to eat (or even hardly drink) anything, my stomach must have shrunk to the size of a walnut. Certainly felt like it. This meant finally starting with PEG feeding was a bit more difficult than if I had started more promptly.
Others also speak of a pump-type feeding tube, which they can have run all night as they sleep, but thru the Port? That sounds like an IV bag type of feeding, and is not typical for us, outside of the hospital and a visit with the patient struggling with dehydration, etc.
Sorry to hear you were another who waited to get the PEG, and experienced the suffering it took to prompt the Drs to install it. You're far from the first to provide that accounting in their treatment experience. However, the PEG is still a bit of a "hot button topic" here, as there have been a number of us who went thru tx and never got one- though some possibly coulda benefited if they had gotten one. I got my Port and G-tube/PEG before treatment started, as my Onco knew where my delivery of C&R would take me, and have absolutely no regrets. As is, here, while a number of us are PEG advocates, I think most/some of us (John included!!!) have reached the collective opinion that the PEG matter is best left for the C team of Onco, Rad and ENT-diagnosis to advise and decide upon (with the patient) based on the C and treatment specifics for the individual patient. Still, us PEG advocates are happy to hear of another who benefited for having a PEG installed, though sorry your condition reached the point that you needed it.
kcass0 -
"Magic Mouthwash"?rasselas said:Mouthwash with lidocaine
When the mouth, tongue, gums start hurting, get a suitable mouthwash with added lidocaine (0.1%). I don't know if this is commercially available, my ENT clinic in the hospital made up its own, but I imagine one can get it made up if you have a prescription. You need the mouthwash to keep your mouth clean but the extra lidocaine is a light anaesthetic which helps keep the pain levels down. You can gargle as frequently as you want and the lidocaine goes straight to the bits that hurt with instant relief. Not to be swallowed however and its hard to get it to the back of the throat. But I wish I had had this stuff earlier than in the 6th week of treatment!
I think this is what you are referring to. Was told Walgreen's wants a 24-hour advance notice for the mixing of it. Hospital gals even referred to it by this MM name. Sounds like a name the March Hare woulda given it, but it's the only thing I ever heard it called. Is pretty-much a standard when one gets rads to the mouth/above the chin. Not sure about the gargling of it, as I used to just swish and spit, but can see where gargling would allow it to get farther down in the throat for relief.
rasselas- welcome to our world. Great to hear you made it thru tx okay
kcass0 -
The pump for a PEG/G Tube - recommend very highlyKent Cass said:IV?
Others also speak of a pump-type feeding tube, which they can have run all night as they sleep, but thru the Port? That sounds like an IV bag type of feeding, and is not typical for us, outside of the hospital and a visit with the patient struggling with dehydration, etc.
Sorry to hear you were another who waited to get the PEG, and experienced the suffering it took to prompt the Drs to install it. You're far from the first to provide that accounting in their treatment experience. However, the PEG is still a bit of a "hot button topic" here, as there have been a number of us who went thru tx and never got one- though some possibly coulda benefited if they had gotten one. I got my Port and G-tube/PEG before treatment started, as my Onco knew where my delivery of C&R would take me, and have absolutely no regrets. As is, here, while a number of us are PEG advocates, I think most/some of us (John included!!!) have reached the collective opinion that the PEG matter is best left for the C team of Onco, Rad and ENT-diagnosis to advise and decide upon (with the patient) based on the C and treatment specifics for the individual patient. Still, us PEG advocates are happy to hear of another who benefited for having a PEG installed, though sorry your condition reached the point that you needed it.
kcass
I can recommend the pump heartily, and it is not an IV-type set up. You do hang it up on an IV bag, mostly for convenience. It's a small, easy to use box, and a disposable plastic feeding bag that you can actually use for 24 hours before you toss it. The tube of the feeding bag snaps through the pump box, the pump box plugs into the wall, and the spigot on the end of the disposable feeding bag snaps neatly and tightly into the end of your PEG tube. Voila. Set the feeding rate to what you can tolerate best, sit back and listen to the pump faintly hum. Insurance pays for it, and when you have the pump, insurance will also pay for the food, which they sometimes otherwise won't.
Kent; actually, several folks on this board have successfully used the pump. It works especially well when chemo makes you very nauseous, as you can feed very slowly.
Deb0 -
DebD Lewis said:The pump for a PEG/G Tube - recommend very highly
I can recommend the pump heartily, and it is not an IV-type set up. You do hang it up on an IV bag, mostly for convenience. It's a small, easy to use box, and a disposable plastic feeding bag that you can actually use for 24 hours before you toss it. The tube of the feeding bag snaps through the pump box, the pump box plugs into the wall, and the spigot on the end of the disposable feeding bag snaps neatly and tightly into the end of your PEG tube. Voila. Set the feeding rate to what you can tolerate best, sit back and listen to the pump faintly hum. Insurance pays for it, and when you have the pump, insurance will also pay for the food, which they sometimes otherwise won't.
Kent; actually, several folks on this board have successfully used the pump. It works especially well when chemo makes you very nauseous, as you can feed very slowly.
Deb
Think Sweet converted to this type, too. What will they think of next? My G-tube mighta been the Civil War/1860's model! Can see where the pump-type mighta been an advantage in the worst of times, when the second can of Jevity was a willpower struggle to pour into my PEG. Thanks, Deb.
kcass0 -
tip
RT doctor said to gargle with one pint of water + 1 tsp salt + 1 tsp baking soda after drinking anything but water and eating. This keeps tongue and mouth clean of phlem and sugars and helps prevent sore throat and fungus like thrush.
Also, swallow therapist gave exercises for throat and tongue to keep ability to swallow. Apparently if you stop using those muscles they never come back! So, swallow even if it hurts. Even 4 ounces of liquid is better than nothing.
Hope this helps.
Debbie0 -
Hydrogen Peroxide and Baking Sodajim and i said:tip
RT doctor said to gargle with one pint of water + 1 tsp salt + 1 tsp baking soda after drinking anything but water and eating. This keeps tongue and mouth clean of phlem and sugars and helps prevent sore throat and fungus like thrush.
Also, swallow therapist gave exercises for throat and tongue to keep ability to swallow. Apparently if you stop using those muscles they never come back! So, swallow even if it hurts. Even 4 ounces of liquid is better than nothing.
Hope this helps.
Debbie
That was my swish and spit....for the rinses.
For nutrition and swallowing, as I didn't have the PEG I used my prescribed meds to numb up the throat (liquid hydrocodon and dissolved percocet), I did have liquid morphine, but it made me sick and offered no pain relief. Then taking in a glass of water, 1-2 Ensures Plus and a few of the DelMonte sliced peaches in light syrup...followed by more water.
That was my mainsta for the last few weeks of rads and the next few weeks while still cooking.
I would do that routine 3-4 time a day. The peaches were soft enough and had enough light syrup to help slide down the throat with minimal discomfort and still using the swallowing muscles and reflexes.
Best,
John0 -
2 short tips
As you near the end and only have 1-2 localized sores, ask about pure lidocaine gel - we had some that had been prescribed for my daughter's strep throat and Doug was able to apply it directly to 1 troublesome sore with a q-tip before eating without having to numb his whole mouth.
For caregivers, use a spreadsheet or something similar to keep a daily log of the meds, food intake and symptoms. This saved us when Doug was really super-nauseated and the doctors had tried everything. We looked and found the two drugs that had helped the most and then combined them. It worked. We never would have done that otherwise, as the radiation doctors were opposed to one of the drugs and the chemo guy was opposed to the other. Neither argued, however, with success.0 -
MM Here, TooKent Cass said:"Magic Mouthwash"?
I think this is what you are referring to. Was told Walgreen's wants a 24-hour advance notice for the mixing of it. Hospital gals even referred to it by this MM name. Sounds like a name the March Hare woulda given it, but it's the only thing I ever heard it called. Is pretty-much a standard when one gets rads to the mouth/above the chin. Not sure about the gargling of it, as I used to just swish and spit, but can see where gargling would allow it to get farther down in the throat for relief.
rasselas- welcome to our world. Great to hear you made it thru tx okay
kcass
but mine was called "Miles Mixture". I think Magic Mouthwash was better - my Miles Mixture didn't do much at all for pain. Funny - the Miles Mixture they made at the hospital was a different color (pinkish) and tasted better than my normal goo. I swished and gargled the MM.0 -
Dry-mouthDrMary said:2 short tips
As you near the end and only have 1-2 localized sores, ask about pure lidocaine gel - we had some that had been prescribed for my daughter's strep throat and Doug was able to apply it directly to 1 troublesome sore with a q-tip before eating without having to numb his whole mouth.
For caregivers, use a spreadsheet or something similar to keep a daily log of the meds, food intake and symptoms. This saved us when Doug was really super-nauseated and the doctors had tried everything. We looked and found the two drugs that had helped the most and then combined them. It worked. We never would have done that otherwise, as the radiation doctors were opposed to one of the drugs and the chemo guy was opposed to the other. Neither argued, however, with success.
Stoppers 4 dry-mouth spray at night to get some good needed sleep
Hondo0 -
Yupp, IV at homeKent Cass said:IV?
Others also speak of a pump-type feeding tube, which they can have run all night as they sleep, but thru the Port? That sounds like an IV bag type of feeding, and is not typical for us, outside of the hospital and a visit with the patient struggling with dehydration, etc.
Sorry to hear you were another who waited to get the PEG, and experienced the suffering it took to prompt the Drs to install it. You're far from the first to provide that accounting in their treatment experience. However, the PEG is still a bit of a "hot button topic" here, as there have been a number of us who went thru tx and never got one- though some possibly coulda benefited if they had gotten one. I got my Port and G-tube/PEG before treatment started, as my Onco knew where my delivery of C&R would take me, and have absolutely no regrets. As is, here, while a number of us are PEG advocates, I think most/some of us (John included!!!) have reached the collective opinion that the PEG matter is best left for the C team of Onco, Rad and ENT-diagnosis to advise and decide upon (with the patient) based on the C and treatment specifics for the individual patient. Still, us PEG advocates are happy to hear of another who benefited for having a PEG installed, though sorry your condition reached the point that you needed it.
kcass
Hi Kent,
Yes over this side of the pond I was able to have IV feeding via my port at home. Connection in the evening was done by a daily health care visitor but it is very possible for you or a family member to learn to do it your/themself. There are just a lot of precautions for good hygiene because everything is indirectly or directly linked to your bloodstream. And therte is no pump, so up to 4 pints can take up to 15 hours or so. Disconection in the mornings I did on my own after a few days. That part is easier! If you don't have a PEG, if your needs are likely to be short term, and you don't mind being rigged up for such a long period, then port IV feeding is probably the best choice.0 -
Yupp, IV at homeKent Cass said:IV?
Others also speak of a pump-type feeding tube, which they can have run all night as they sleep, but thru the Port? That sounds like an IV bag type of feeding, and is not typical for us, outside of the hospital and a visit with the patient struggling with dehydration, etc.
Sorry to hear you were another who waited to get the PEG, and experienced the suffering it took to prompt the Drs to install it. You're far from the first to provide that accounting in their treatment experience. However, the PEG is still a bit of a "hot button topic" here, as there have been a number of us who went thru tx and never got one- though some possibly coulda benefited if they had gotten one. I got my Port and G-tube/PEG before treatment started, as my Onco knew where my delivery of C&R would take me, and have absolutely no regrets. As is, here, while a number of us are PEG advocates, I think most/some of us (John included!!!) have reached the collective opinion that the PEG matter is best left for the C team of Onco, Rad and ENT-diagnosis to advise and decide upon (with the patient) based on the C and treatment specifics for the individual patient. Still, us PEG advocates are happy to hear of another who benefited for having a PEG installed, though sorry your condition reached the point that you needed it.
kcass
Hi Kent,
Yes over this side of the pond I was able to have IV feeding via my port at home. Connection in the evening was done by a daily health care visitor but it is very possible for you or a family member to learn to do it your/themself. There are just a lot of precautions for good hygiene because everything is indirectly or directly linked to your bloodstream. And therte is no pump, so up to 4 pints can take up to 15 hours or so. Disconection in the mornings I did on my own after a few days. That part is easier! If you don't have a PEG, if your needs are likely to be short term, and you don't mind being rigged up for such a long period, then port IV feeding is probably the best choice.0 -
HNC Superthread
I think I owe an apology to Sweet (sweetblood22) who obviously thought of this idea aeons ago. I have only just found my way to her HNC Superthread - not easy so here is the link
http://csn.cancer.org/node/220425
and I expect everything I wanted to achieve with my "best short tips" is already there! I will start working though it.
So apologies from a greenhorn, folks, and go to the superthread.
Sweet, sorry!
Robert0 -
SuperThreadrasselas said:HNC Superthread
I think I owe an apology to Sweet (sweetblood22) who obviously thought of this idea aeons ago. I have only just found my way to her HNC Superthread - not easy so here is the link
http://csn.cancer.org/node/220425
and I expect everything I wanted to achieve with my "best short tips" is already there! I will start working though it.
So apologies from a greenhorn, folks, and go to the superthread.
Sweet, sorry!
Robert
That's OK Robert, Dawn (sweetblood) and I were just seeing how long it was going to take you to conform before we beat you into submission, LOL....
Actually it's usually up to the top every few days or so because Dawn normally bumps it up. We've tried to have CSN make it a sticky so it stays on top, but that hasn't worked out so far.
Dawn prefers nobody post on it so it stays clean with only links, but occasionally a newbie posts replies or comments to it without realizing the intent.
But, I don't want to speak for her too much, she'll punch me in the throat if I start stealing her thunder, LOL....
SuperThread
Best,
John0 -
Oh geez, don't make poorSkiffin16 said:SuperThread
That's OK Robert, Dawn (sweetblood) and I were just seeing how long it was going to take you to conform before we beat you into submission, LOL....
Actually it's usually up to the top every few days or so because Dawn normally bumps it up. We've tried to have CSN make it a sticky so it stays on top, but that hasn't worked out so far.
Dawn prefers nobody post on it so it stays clean with only links, but occasionally a newbie posts replies or comments to it without realizing the intent.
But, I don't want to speak for her too much, she'll punch me in the throat if I start stealing her thunder, LOL....
SuperThread
Best,
John
Oh geez, don't make poor Robert think I'm some kind of psycho woman. Lol. I haven't had to punch anyone in throat. At least not in a month or so. Just kidding. Besides, I was going to see where this was going and if there were any new tips then I would add it to the superthread.
Welcome Robert.
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Best short tips reborn?sweetblood22 said:Oh geez, don't make poor
Oh geez, don't make poor Robert think I'm some kind of psycho woman. Lol. I haven't had to punch anyone in throat. At least not in a month or so. Just kidding. Besides, I was going to see where this was going and if there were any new tips then I would add it to the superthread.
Welcome Robert.
Thank you both for your feedback. Having looked at the Superthread, I see it is a rather different animal to what I wanted to do. My idea was to collect simple short practical tips not generally found in the basic literature. So maybe there is a good reason to continue with it. Let's leave it on and see. Sweet, please take and use whatever you find useful in it.
All the best.
Robert0 -
Handling Mucous (found on a post by jkinobay)
I found these tips on a post by jkinobay, to whom many thanks.
"One more tip for mucous that greatly helped me was Mucinex timed release 12 hour tablets. Until very recently I took one at least once a day before bedtime. Sometimes on problematic days I took 2 a day. It helps tremendously to thin and dissipate the mucous. I still take one maybe once a week when that "ball of stuff" seems to be a little more prominent. I describe it as a wad that won't come up and won't go down. I also have noticed that the "wad" seems to fluctuate in direct proportion to my Turkey Neck Waddles which I am sure you have. All due to inflammation which my Docs say should be gone by the 6-9 month mark. But it all takes time.............as with everything we are going through, patience is priority One."
"IN MY CASE, mucous seemed to be most of the problem with my voice, which disappeared totally for weeks 4-7 of treatment. From what I read and was told by other survivors, mucous is a huge problem since your body's defense mechanism is to double or triple coat everything that got bombarded during treatment. For that I rinsed/gargled several times a day and night with a small glass of as hot water as I could stand containing 1/4 tsp. baking soda and 1/8 tsp. salt. My Oncology Dentist told me this would continuously alter the PH in my mouth and throat and reduce mucous while at the same time help to reduce bacteria and prevent Thrush (which I never had, thank God and Miracle Mouth Wash). I also rinsed/spit with Biotene mouthwash every time I walked past the bathroom (many times day/night). You might be able to buy it from your dentist by the gallon ($30) which is much cheaper and lasts quite awhile. With all this rinse/spit/gargling I only had one or two mouth sores throughout which really amazed my Chemo and Radiation Oncologists. In fact, they asked me to write an oral hygiene protocol for them to give to future patients."0
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