NPC treatment inquiry

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

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! 

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?

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

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!  

Purplemountain 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

Purplemountain 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!!