NPC treatment inquiry
Hello Everyone.
I am new to this website and forum. I am 39 years old asian male and have been diagnosed with NPC in the "early" stage. My treatment plan is 3 bouts of chemo (one every 3 weeks) and a daily dosage of radiation for 33 bouts. I just finished the first week of treatment and recently got thrush in the back of my throat causing more difficulty with swallowing. I am losing weight and considering PEG feeding tube. Can I ask someone who is currently going through the ordeal or has gone through the ordeal and share their experiences with me? Any advice or eperiences shared is greatly appreciated. Wishing everyong a speedy recovery and a life of longevity.
Comments
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I had NPC, also....
Stage III....T1 N2 M0....diagnosed in March of 2012. I had my last rad treatment in the middle of June, and the last chemo treatment August 28, 1012.....My treatment was much like yours, except that I had 35 Radiation treatments, plus 3 adjuvent chemos once radiation was finished. Like yours, the chemo's were every 3 weeks (Cisplatin.....and for the three adjuvents I had Cisplatin plus I carried a 4 day pump of 5FU).
I started treatment with a PEG tube in place....I was already skinny, and didn't have any weight to lose so both Drs. said get it. I didn't use it even once during radiation, but ended up using it exclusively during the adjuvent chemos because my lips started resembling hamburger. Thrush is a PITA, for sure. I had really good luck with liquid Diflucan which I put into my tube....tho for right now, while your mouth is hurting from Thrush, liquid might be an option for you.
One thing is for sure.....you must stay as hydrated as possible, get as much nutrition as possible, and rest....if it takes a PEG tube to get the liquids into you, then do it....it's a teensy surgery....like 45 minutes worth from going to sleep to waking up. I put down 2 liters of water every day....by mouth at first, and then by tube....and I still got dehydrated. Dehydration is horrible....you feel weak, sick, nausiated....the only thing you don't feel is thirsty.
One of my best friends during treatment was 4% milk....calories, hydration, and even taste (the only thing I could taste after the 2nd week of rads). It even gives the illusion that you have saliva in your mouth for a little while. The two things that everybody seems to experience is the taste buds go bye bye.....and desert mouth.
You're going to come out of this just a little abi-normal.....slightly different, but generally you'll be doing what you always did within 9 months to a year.....the taste buds will start to come back, and some saliva....BUT the good news, it's just a bump in the road....a year from now, you'll look back and be saying "did I really do that???"
p
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New post
Welcome, and I am glad that you started a new post. Phrannie said it all and make sure that you check out the Superthread at the top of the forum posts. I didn't have NPC however the treatments are similar. Thrush--I had it the entire time I went through treatment the first time, liquid Nystatin worked for me.
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Hydration and Nutrition
I had stage 4 tonsil in 2007. My treatments are the same as yours. I had (and still have) extra weight, and don't know if that came into play with them not giving me a PEG tube. 6 years later I have one because of radiation scar tissue making it hard to swallow. I feel so much better after 1 week, that I just told my husband tonight I wish I had gotten this during treatment. I was so dehydrated and lost a lot of weight. I went to the hospital almost every day for fluids - even after treatment was over (I didn't have a port either - so got stuck for the IV every time). So, as others say - stay hydrated!!!! The PEG tube will make it possible!
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PEGging up
Hi,
I am in the NO PEG camp but if you are just one week into the first chemo cycle and losing weight, then you will likely benefit from a PEG. They do make it much easier to consume nutrition and stay hydrated. Personally, I did not want that thing sticking out of me and also felt it important that I not get one unless I really needed it. I was able to continue to drink and eat orally which is very important. All my doctors sided with not getting a PEG up front but keeping it as an option if deemed necessary later. I am fully satisfied with the decision to not do the PEG but I do respect others who must decide given their unique circumstances to do it or not.
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NPC
Thank you for the insightful comments. I just came back from radiation treatment. I was prescribed an oral rinse for the thrush. As for the PEG tube, the doctor said it is not preferred but can be done only if needed. Since I can still swallow, I was told to eat however way I can. They will put the tube in me when I am unable to swallow.
Very comfort to know that all of these will not be permanent.
I feel very weak and tired. Maybe as mentioned, I am dehydrated and did not address that issue.
I have craving for food I think may not be good for the condition such as baby back ribs, fried chicken, bacons..etc. Should I eat try to eat them anyways or should I stay away from them? I need to gain weight but this may not be a good type of food to do so. Not sure if I can swallow them as well. Anyone have an opinion on this?
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be smart about your eating habitsPurplemountain said:NPC
Thank you for the insightful comments. I just came back from radiation treatment. I was prescribed an oral rinse for the thrush. As for the PEG tube, the doctor said it is not preferred but can be done only if needed. Since I can still swallow, I was told to eat however way I can. They will put the tube in me when I am unable to swallow.
Very comfort to know that all of these will not be permanent.
I feel very weak and tired. Maybe as mentioned, I am dehydrated and did not address that issue.
I have craving for food I think may not be good for the condition such as baby back ribs, fried chicken, bacons..etc. Should I eat try to eat them anyways or should I stay away from them? I need to gain weight but this may not be a good type of food to do so. Not sure if I can swallow them as well. Anyone have an opinion on this?
You need fluid and calories above all elsse. Eating solid food is a luxury some of us cannot afford. When things got rough during my treatment, I switched to almost 100% Boost or Ensure, getting both fluids and calories at the same time. I had lots of swallowing trouble, but was able to get enough down I didn't lose much weight, and was never dehydrated. No peg tube for me.
BTW, often thrush is resistant to the liquid preps like nystatin. If your oral health isn't way better in a couple of days get evaluated again. Sometimes it takes a pill, like ketoconazole to get the job done.
best to you
Pat
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As long as you can swallowPurplemountain said:NPC
Thank you for the insightful comments. I just came back from radiation treatment. I was prescribed an oral rinse for the thrush. As for the PEG tube, the doctor said it is not preferred but can be done only if needed. Since I can still swallow, I was told to eat however way I can. They will put the tube in me when I am unable to swallow.
Very comfort to know that all of these will not be permanent.
I feel very weak and tired. Maybe as mentioned, I am dehydrated and did not address that issue.
I have craving for food I think may not be good for the condition such as baby back ribs, fried chicken, bacons..etc. Should I eat try to eat them anyways or should I stay away from them? I need to gain weight but this may not be a good type of food to do so. Not sure if I can swallow them as well. Anyone have an opinion on this?
food....then I say go for it! You have about a week more of taste buds....I spent the first two weeks of rads eating Mexican food and cheeseburgers deluxe....LOL.....and then all that fun was over for me. Drink an Ensure or Ensure Plus along with the food, use it as a snack until you have to use it to get your calories.....keep a BIG bottle of water next to your elbow all the time, and make yourself drink it. I used to drink A & W Rootbeer 95% of the time before cancer.....anymore....it's water only, and lots of it.....everyday.
Fatigue is a big part of radiation and chemo....and it takes quite a while after treatment to get blood counts back up.....be good to yourself and rest when your body tells you to. On the other hand, DO get out and walk, or do small chores around the house....it's good to do something besides hang out in a recliner. You're going to get more fatigued as treatment progesses.....it's just part of treatment, just know that things will be heading for an upswing once treatment is over. Recovery is slow....very slow....but STEADY.
p
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harder to eatPurplemountain said:NPC
Thank you for the insightful comments. I just came back from radiation treatment. I was prescribed an oral rinse for the thrush. As for the PEG tube, the doctor said it is not preferred but can be done only if needed. Since I can still swallow, I was told to eat however way I can. They will put the tube in me when I am unable to swallow.
Very comfort to know that all of these will not be permanent.
I feel very weak and tired. Maybe as mentioned, I am dehydrated and did not address that issue.
I have craving for food I think may not be good for the condition such as baby back ribs, fried chicken, bacons..etc. Should I eat try to eat them anyways or should I stay away from them? I need to gain weight but this may not be a good type of food to do so. Not sure if I can swallow them as well. Anyone have an opinion on this?
Hi,
Eat whatever you can get down for as long as you can, especially since you are losing weight already. Strive for high density caloric foods. Fats are great as they pack a lot of calories in small volumes. All the meats will soon likely be hard to chew and swallow. What I did as it became harder to swallow solid food was to grind up solid foods in a cheap baby food grinder. It does an amazing job to puree foods to a texture that goes down quite well.
Also, look into various shakes made from powder stuff you get at health food stores or online from an body buidling site. High protein and complex carb powders turn into great drinks. Very easy to prepare using as shaker cup. Throw the powder in, add cold milk, and some ice cubes and shake away. The shaking aerates the drink making it less dense and the ice cubes really cool it down making it easier to consume.
Of course, try as many soft foods such as yogurt and puddings to go down easier.
Ditto on the hydration. Plenty of water but personally I counted most of the shake as liquid so it made it easier to keep up.
don
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If you can eat.....Purplemountain said:NPC
Thank you for the insightful comments. I just came back from radiation treatment. I was prescribed an oral rinse for the thrush. As for the PEG tube, the doctor said it is not preferred but can be done only if needed. Since I can still swallow, I was told to eat however way I can. They will put the tube in me when I am unable to swallow.
Very comfort to know that all of these will not be permanent.
I feel very weak and tired. Maybe as mentioned, I am dehydrated and did not address that issue.
I have craving for food I think may not be good for the condition such as baby back ribs, fried chicken, bacons..etc. Should I eat try to eat them anyways or should I stay away from them? I need to gain weight but this may not be a good type of food to do so. Not sure if I can swallow them as well. Anyone have an opinion on this?
KEEP EATING!
Eat what you like, what you crave and what you enjoy for as long as you can!!!!My doctor was not a fan of the PEG and let me go 7 days of no nutrition before he finally caved. I would drink water and something for calories and immediately vomit. He said since I technically "could" swallow that I didn't need it. I just kept absolutely NOTHING down. So, don't let it get to that point for you (it probably won't, I'm just saying how some doctors HATE the PEG tubes), because I was on IV's for fluids every other day during that 7 days. I actually had to go to his associate to get the order for the tube. The surgeon that put the PEG in was furious that they waited so long to do it. It took them 1/2 hour to find a vein that hadn't collapsed to give me the IV. None of this is cause for you to worry, it was the fault of my doctor. The reason I'm saying this is because technically I was still able to swallow, but couldn't keep any calories in my body. If your doctor is one like mine who hates the PEG, don't be afraid to stand up for what you want/need. My husband basically TOLD them to get me a PEG. Within 24 hours of getting the tube I felt wonderful! I know, for a fact, that I would not have made it through without one. If you need one, don't worry about the surgery...it's nothing. If you can get by without one, that's great too!
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Unable to hold down ensure / Thrush prescription
Thank you again everyone.
Ensure calorie drinks
I've been trying Ensure and Boost drinks for calories but the thickness of it cause nausea for me. Some gets stuck in my throat like mucous. This cause difficulty with breathing for me. Can anyone give suggestions on how to bypass this issue for me? I tried mixing it with water and the taste or flavor still made my stomach uncomfortable. I was told about Ensure clear which might help which I have not tried yet. I think I can drink gatorade...would that be a good substitute?
Thrush
My doctor prescribed an oral rinse. She told me to mix 5ml of 1gm Carafate with 5ml of 12.5mg Q-Dryl and to rinse in my mouth and quickly swallow the whole content. I did that and immediately my whole body became so weak like I just had a dose of chemo treatment in me. I could hardly walk. Is this normal? I'm going back today for another daily session of radiation. I will bring this issue with the doctor and maybe ask for another prescription for the thrush. Can any suggest something they used that helped? Or should I wait a few day and see if it resolved on it own?
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The Ensure clear drinksPurplemountain said:Unable to hold down ensure / Thrush prescription
Thank you again everyone.
Ensure calorie drinks
I've been trying Ensure and Boost drinks for calories but the thickness of it cause nausea for me. Some gets stuck in my throat like mucous. This cause difficulty with breathing for me. Can anyone give suggestions on how to bypass this issue for me? I tried mixing it with water and the taste or flavor still made my stomach uncomfortable. I was told about Ensure clear which might help which I have not tried yet. I think I can drink gatorade...would that be a good substitute?
Thrush
My doctor prescribed an oral rinse. She told me to mix 5ml of 1gm Carafate with 5ml of 12.5mg Q-Dryl and to rinse in my mouth and quickly swallow the whole content. I did that and immediately my whole body became so weak like I just had a dose of chemo treatment in me. I could hardly walk. Is this normal? I'm going back today for another daily session of radiation. I will bring this issue with the doctor and maybe ask for another prescription for the thrush. Can any suggest something they used that helped? Or should I wait a few day and see if it resolved on it own?
aren't bad at all....but they don't contain much in the way of calories (only 180 calories), so you'd have to drink a LOT of them. They do have 9 grams of protein, tho.
I'd try mixing the Ensure with milk.....even if you have to do half and half to thin it out. Or....if you do get an Ensure down and keep it down, chase it with a glass of 4% milk. I went through a gallon of milk every 2 days all through radiation....it has calories, nutrition, and hydration, all mixed in one drink
. I've never heard anyone getting a reaction to Thrush meds like the one you had. The drug they gave me for Thrush was Diflucon....it comes in liquid and pill form....works on thrush from the inside out, rather than the outside in like a rinse. The trush would clear up in a couple of days....Thrush seems to come and go....so having something that works on hand was a blessing. I think I had my last bout of it about 3 months after treatment.
You might keep the thought of a PEG tube on the top of your list of possibilities.....you're having a number of problems now at only a week into radiation. Course....you just had chemo a week ago, too....right? It always took me 5 to 7 days to get over a chemo dose.....so some of your nausea may still be coming from that.
p
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phranniesphrannie51 said:The Ensure clear drinks
aren't bad at all....but they don't contain much in the way of calories (only 180 calories), so you'd have to drink a LOT of them. They do have 9 grams of protein, tho.
I'd try mixing the Ensure with milk.....even if you have to do half and half to thin it out. Or....if you do get an Ensure down and keep it down, chase it with a glass of 4% milk. I went through a gallon of milk every 2 days all through radiation....it has calories, nutrition, and hydration, all mixed in one drink
. I've never heard anyone getting a reaction to Thrush meds like the one you had. The drug they gave me for Thrush was Diflucon....it comes in liquid and pill form....works on thrush from the inside out, rather than the outside in like a rinse. The trush would clear up in a couple of days....Thrush seems to come and go....so having something that works on hand was a blessing. I think I had my last bout of it about 3 months after treatment.
You might keep the thought of a PEG tube on the top of your list of possibilities.....you're having a number of problems now at only a week into radiation. Course....you just had chemo a week ago, too....right? It always took me 5 to 7 days to get over a chemo dose.....so some of your nausea may still be coming from that.
p
Thank you for the insight P.
Yes, I had chemo about 10 days ago. Took me a week to get over it. Today I am able to eat and drink comfortably and better when I took the nausea pill an hour prior to eating. Now I just need to eat like crazy to gain 1 lb / day before my next chemo which is due in 11 days from now.
You are right about the thrush. It comes and goes. Some of it cleared up by itself. Although now I can see the side of my mouth (the insdie mucosal layer) beginning to peal with some slight redness on the side of it. Seems mucositis is the next tennant to drop by for me. Any suggestion to evict that or at least effluage it so no pain or prevent progression?
Thanks.
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That was exactlyPurplemountain said:Unable to hold down ensure / Thrush prescription
Thank you again everyone.
Ensure calorie drinks
I've been trying Ensure and Boost drinks for calories but the thickness of it cause nausea for me. Some gets stuck in my throat like mucous. This cause difficulty with breathing for me. Can anyone give suggestions on how to bypass this issue for me? I tried mixing it with water and the taste or flavor still made my stomach uncomfortable. I was told about Ensure clear which might help which I have not tried yet. I think I can drink gatorade...would that be a good substitute?
Thrush
My doctor prescribed an oral rinse. She told me to mix 5ml of 1gm Carafate with 5ml of 12.5mg Q-Dryl and to rinse in my mouth and quickly swallow the whole content. I did that and immediately my whole body became so weak like I just had a dose of chemo treatment in me. I could hardly walk. Is this normal? I'm going back today for another daily session of radiation. I will bring this issue with the doctor and maybe ask for another prescription for the thrush. Can any suggest something they used that helped? Or should I wait a few day and see if it resolved on it own?
what happened with me. The thick, nasty stuff in my throat gagged me constantly, so when I would drink a milky type drink like Boost or Ensure, I would gag and throw up. It made things seem too thick in my throat. I did drink Gatorade (sip here and there) just to keep my swallowing muscles working. I also would sip water, but once it got to where I couldn't get calories or nutrition in me that way....I got the PEG. I didn't have chemo, just rads but that thick saliva was awful. I still have it first thing when I wake up, but man...it gets so much better in time. Hang tough...you've got this!!
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It's so hard during chemo/radsPurplemountain said:phrannies
Thank you for the insight P.
Yes, I had chemo about 10 days ago. Took me a week to get over it. Today I am able to eat and drink comfortably and better when I took the nausea pill an hour prior to eating. Now I just need to eat like crazy to gain 1 lb / day before my next chemo which is due in 11 days from now.
You are right about the thrush. It comes and goes. Some of it cleared up by itself. Although now I can see the side of my mouth (the insdie mucosal layer) beginning to peal with some slight redness on the side of it. Seems mucositis is the next tennant to drop by for me. Any suggestion to evict that or at least effluage it so no pain or prevent progression?
Thanks.
to know which is doing what. Rads for sure affect the mouth.....but chemo can, too. The Onc will tell you the Rads are doing it....the Rad doc will tell you it's the chemo... (these two cancer specialists are the champions of finger pointing.....LOL). I'm curious if your Dr. ever mentioned Mugard to you? We've been having a discussion about Mugard, because another member was having a horrible time getting her insurance company to pay for it....but some companies do (mine did). I don't know if your mouth is too far gone for it to do any good, but maybe ask your Onc if they have a sample bottle in the office you could try. Mugard is a preventative of muscositis, so is usually started early in radiation.
I never found anything that took care of the pain of muscositis....all I managed to do was suffer through it, and finding something I could actually put into my mouth and swallow became my mission (I was terrified of losing my swallow-er).....L-glutamine powder mixed with water was the only thing I found that I could get into my mouth without pain. My lips were like hamburger (like they bled if I even talked)....so after I found the L-glutamine mix, I had to find something I could touch to my lips to hold the mix....accidently found out that styrofoam cups worked for that. One thing about cancer.... we sure get innovative....ha!
p
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Mucositis / thick mucous
Thank you P and Tracy.
My mucositis was not painful. I think I saw pealing of the skin inside and freaked out but no pain. I've been brushing my teeth with an automatic toothbrush with Biotene toothpaste. I then follow up with rinsing my mouth with salt plus baking soda and water to thin up the thick saliva. Then rinse that off with Kangen water made especially for killing bacterias. I then proceed to rinse with Biotene to give the mouth a slimy saliva like texture before going to bed. The thrush I had subsided but still there. I didn't use any thing specific for it just the rinsing I described. After today radiation session which is almost 2 weeks by tomorrow. My upper palate feels hard on texture not smooth or soft..probably radiation is doing the job of burning it and the tongue taste buds giving some sign of going too. So good sign that the tumor is experiencing the same thing only at a higher dosage?
Thick mucous with milky drink. I've been introduced to NeilMed sinus rinse. It is a bottle where I add warm water and the included salt content to the solution. I then squirt it up into the nose all the way to the top where the sinus cavity is while plugging one nostril. The water squirt up lightly then comes down to the back of the throat. This will clear all the mucous or phlegm. It gives the throat an instant comfort and easy to breathe.
5 more weeks of radiation to go.
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Hi PurplePurplemountain said:Mucositis / thick mucous
Thank you P and Tracy.
My mucositis was not painful. I think I saw pealing of the skin inside and freaked out but no pain. I've been brushing my teeth with an automatic toothbrush with Biotene toothpaste. I then follow up with rinsing my mouth with salt plus baking soda and water to thin up the thick saliva. Then rinse that off with Kangen water made especially for killing bacterias. I then proceed to rinse with Biotene to give the mouth a slimy saliva like texture before going to bed. The thrush I had subsided but still there. I didn't use any thing specific for it just the rinsing I described. After today radiation session which is almost 2 weeks by tomorrow. My upper palate feels hard on texture not smooth or soft..probably radiation is doing the job of burning it and the tongue taste buds giving some sign of going too. So good sign that the tumor is experiencing the same thing only at a higher dosage?
Thick mucous with milky drink. I've been introduced to NeilMed sinus rinse. It is a bottle where I add warm water and the included salt content to the solution. I then squirt it up into the nose all the way to the top where the sinus cavity is while plugging one nostril. The water squirt up lightly then comes down to the back of the throat. This will clear all the mucous or phlegm. It gives the throat an instant comfort and easy to breathe.
5 more weeks of radiation to go.
Sorry you have this stuff but glad to have you with us. I too am NPC yes it is hard on you going through treatment but you will get through it like the rest of us did. You are starting to get into the weeks of feeling the effects of the treatment on your body. Just take is easy and get as much rest as you can. The NeilMed sinus rinse it a great thing to do, I am 8 years passed my 2nd treatment and I still do it twice a day. Also your saliva might start to dry up some, I been using Stoppers4 Dry Mouth spray for years now, I can sleep almost all night without having a sticky dry mouth when I wake up feeling.
Wishing you the best through your treatment.
God Bless
Hondo
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Stoppers4 Dry MouthHondo said:Hi Purple
Sorry you have this stuff but glad to have you with us. I too am NPC yes it is hard on you going through treatment but you will get through it like the rest of us did. You are starting to get into the weeks of feeling the effects of the treatment on your body. Just take is easy and get as much rest as you can. The NeilMed sinus rinse it a great thing to do, I am 8 years passed my 2nd treatment and I still do it twice a day. Also your saliva might start to dry up some, I been using Stoppers4 Dry Mouth spray for years now, I can sleep almost all night without having a sticky dry mouth when I wake up feeling.
Wishing you the best through your treatment.
God Bless
Hondo
Thank you Hondo.
It seems Walgreen carry this product. So, I'll give it a shot and hopefully it give me a restful uninterrupted sleep.
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Stoppers 4Purplemountain said:Stoppers4 Dry Mouth
Thank you Hondo.
It seems Walgreen carry this product. So, I'll give it a shot and hopefully it give me a restful uninterrupted sleep.
I am not sure if Walgreen is still carrying Stoppers 4 or not, I get my online at Drugstore .com http://www.drugstore.com/
http://www.drugstore.com/search/search_results.asp?srchtree=1&Ntt=Stoppers+4&N=4294947188&Ntk=All
God Bless
Hondo
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