Two and a half weeks in to radiation therepy...
And...he's still yelling at the TV when his football team messes up 
On a serious note though, I did notice that he was noticably more tired toward the end of this week, appetite has definitely taken a nose dive, and throat is starting to get a slight 'raw' feeling...No radiation burn yet, or really even much, if any, redness. He is using the Calandula Cream; I am a believer so far. We are doing the things we can do to keep the worst of the symptoms at bay for as long as possible, and I guess so far, so good.
As far as weight loss, so far he is down three pounds. Taste is 90% gone, and the only thing that even tastes remotely good to him is chicken noodle soup. I think for the past 3-4 days that is literally the only thing he has eaten (he is hydrating though!). I'm just happy he's eating something and am trying not to panic about it being the only thing going in. Can someone please assure me that this is ok so that I can really stop worring now...
As you all had warned us, it's not a walk in the park. But, as so many of you went on to say...it is managable (so far). Thanks to you all again for all of the great advice before we embarked on this journey...
Hope everyone had a great weekend!
Jamie
Comments
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It is ok
....
It won't be long before even "remotely good" is passe...and everything tastes like nothing. I think it's marvelous that he's only lost 3 lbs so far, and he's two weeks in. Down the road (soon) he's going to be needed extra calories because treatment seems to burn them faster than they get burned normally. He sounds to me like he's doing pretty damned good!
Along with the Calendula cream, maybe get some pure Aloe Vera....I used to put that on, let it dry....then slather on the Calendula....my neck faired pretty darn good.
I think this is a very good update!! He's getting close to the half way mark.....yeah!!!
p
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keep moving forward
Jamie,
You may loosen the big girl pants, but don’t take them off.
Up through week 3 is no judge of the last 4 weeks. I did not get neck burn until weeks 6, 7 & 8, some don’t get it at all.
I ate my last hamburger during week 3 and I thought it tasted funky. I ended up swithching over to PEG and liquid. I tried all the suggestions given here with no luck. A true H&N warrior blazes their own trail (i.e. figure out what works for you).
Now, back to the ball game.
Matt
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Thanks friends!
Thank you for chiming in and letting me know we are pretty much right on 'schedule'. I know we still have a long road ahead, so yes Matt, I will not get too comfortable yet...
They say that laughter is the best medicine...Matt, you always have a way of bringing a genuine chuckle out of me. I will take your advice and keep my 'big girl pants' on loosely for now
Jamie
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AbiNormal ~ He's On His Way...
Sounds like he is on the path of the Yellow Brick Road, that we have all traveled...
I never really had serious burns, more like a sunburn that discolored, then peeled..., not painful. I took a lot of warm to hot showers which soothed and got rid of the dead skin.
I mainly took in Ensures (strawBerry specifically), but that was with some pain med chasers, and thick lidocaine pre...and a lot of water 3-4 times a day.
He will probably have less energy as he takes in less calories, it's hard to keep enough in you as the body is trying to repair itself..., but try to take in as much as you can to maintain.
He and you seem to be doing all of the right things...
Stay pro-active, re-active is not the place to be...
Best,
John
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Sounds good!
Everything sounds quite "normal" (whatever that is! haha) I lived off of chicken noodle soup for about 2 1/2 weeks. It's about the only thing that didn't "taste" nasty! I ended up with a PEG but that was truly not a big deal at all. I was terrified of getting one, but wished I had earlier than I did
I hope he continues to do so well. Only 3 lbs is quite good! You're a great caregiver! 0 -
Jamie, I hate to be a Debbie
Jamie, I hate to be a Debbie Downer but I would worry about the calories too. Our Rad doc told us Jim needed a lot of protein and calories because the rads burned a lot of calories and the body needed the extra protein to repair itself. I would relay the lack of calorie intake to the doctor and check with put some ensure in the tube and some pureed vegetables (very finely and a lot of liquid) to give him the calories and vitamins he needs to stay strong. I am praying all continues to go well.
Debbie
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jamie, u seem 2 b well
jamie, u seem 2 b well prepared and do'n all the right stuff. keep up the great job. i pray he continues 2 do well.
God bless.
dj
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Thanks again!
John, funny you mention strawberry...when he was eating fruit, before the chicken noodle soup craze, the only fruit he would eat were strawberries! I will have to get some strawberry Ensure in the house and see if he will go for it!
Tracy, good to hear that he is not alone in the chicken soup craze! LOL!
Debbie, I will bring it up to the Doc just to make sure everyone's on the same page...it will be interesting on Wed. to see how much weight he lost this week. I would imagine it may be shocking considering the only thing he is really eating is the soup, AND, he is starting to fit into clothes he hasn't been able to wear in a while. Hmmm...
DJ thank you for the vote of confidence! I can't imagine going through this (even though I am only the caregiver) without having found my H&N familyl...you all are the best support team a gal could ask for!!
Jamie
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On targetj4mie said:Thanks again!
John, funny you mention strawberry...when he was eating fruit, before the chicken noodle soup craze, the only fruit he would eat were strawberries! I will have to get some strawberry Ensure in the house and see if he will go for it!
Tracy, good to hear that he is not alone in the chicken soup craze! LOL!
Debbie, I will bring it up to the Doc just to make sure everyone's on the same page...it will be interesting on Wed. to see how much weight he lost this week. I would imagine it may be shocking considering the only thing he is really eating is the soup, AND, he is starting to fit into clothes he hasn't been able to wear in a while. Hmmm...
DJ thank you for the vote of confidence! I can't imagine going through this (even though I am only the caregiver) without having found my H&N familyl...you all are the best support team a gal could ask for!!
Jamie
Like John, I never had a painful neck burn. It wasn't until I finished tx that my neck and cheek turned dark brown and peeled. While chicken soup will certainly accomplish keeping the swallower working, I would think it difficult to eat enough to take in all of the needed calories. Cream soups have more calories and has he tried a loaded baked potato with butter and sour cream? How about pancakes loaded with syrup? Malts/shakes? Keep trying........
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Hmm...hwt said:On target
Like John, I never had a painful neck burn. It wasn't until I finished tx that my neck and cheek turned dark brown and peeled. While chicken soup will certainly accomplish keeping the swallower working, I would think it difficult to eat enough to take in all of the needed calories. Cream soups have more calories and has he tried a loaded baked potato with butter and sour cream? How about pancakes loaded with syrup? Malts/shakes? Keep trying........
You have some good ideas there! He has tried shakes, homemade cream of wild rice tonight, but I never thought of pancakes or a really creamy baked potato! The more ideas to try the better! I'll be sure to bring these ideas up to him.
Jamie
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My sister kept mej4mie said:Hmm...
You have some good ideas there! He has tried shakes, homemade cream of wild rice tonight, but I never thought of pancakes or a really creamy baked potato! The more ideas to try the better! I'll be sure to bring these ideas up to him.
Jamie
in brocolli and cheese soup....veggies seem to hold a taste longer than anything else. Potatoes and I didn't seem to mix very well during treatment, they were like paste to me. In the first 3 or 4 weeks of rads, tho....I'd make myself mac and cheese, and then thin it out with half 'n' half (for calories)....so it was more like mac and cheese soup, ha! Scrambled eggs that are still a little wet worked well, too....they didn't taste particularily good, but they went down easy and quickly...and are full of protein.
There's going to come a time in the next few weeks where eating is a daily duty, and not done for pleasure....I started doing my Ensures by the clock rather than think I'd wait till I got hungry, cuz that wasn't happening. First pop in the morning, I'd do one, then I'd do one at 1:00 pm while at the Onc's office for my daily Amifostine....then another later after I woke up from my nap at 6:00 pm....I was using Boost VHC because I figured if I was going to drink 8 oz (a limit of mine
)....that I'd get as many calories as I could and it has 530. Longtermsurvivor taught me about knowing how many gulps it takes to get it down....so I'd open it, knowing that 13 - 15 swallows from now, the meal was over and I had nearly 1/3 of my calories taken care of. I just made it part of my daily jobs.....A switch happens where a person eats to live, rather than live to eat.....where getting food down isn't any more fun than going to rads, takes about as much time....and has to be done!p
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Question...phrannie51 said:My sister kept me
in brocolli and cheese soup....veggies seem to hold a taste longer than anything else. Potatoes and I didn't seem to mix very well during treatment, they were like paste to me. In the first 3 or 4 weeks of rads, tho....I'd make myself mac and cheese, and then thin it out with half 'n' half (for calories)....so it was more like mac and cheese soup, ha! Scrambled eggs that are still a little wet worked well, too....they didn't taste particularily good, but they went down easy and quickly...and are full of protein.
There's going to come a time in the next few weeks where eating is a daily duty, and not done for pleasure....I started doing my Ensures by the clock rather than think I'd wait till I got hungry, cuz that wasn't happening. First pop in the morning, I'd do one, then I'd do one at 1:00 pm while at the Onc's office for my daily Amifostine....then another later after I woke up from my nap at 6:00 pm....I was using Boost VHC because I figured if I was going to drink 8 oz (a limit of mine
)....that I'd get as many calories as I could and it has 530. Longtermsurvivor taught me about knowing how many gulps it takes to get it down....so I'd open it, knowing that 13 - 15 swallows from now, the meal was over and I had nearly 1/3 of my calories taken care of. I just made it part of my daily jobs.....A switch happens where a person eats to live, rather than live to eat.....where getting food down isn't any more fun than going to rads, takes about as much time....and has to be done!p
Can I buy the Boost VHC at a grocery store? I have seem Ensure, and I have seen Boost, but don't recall seeing Boost VHC (of course, I wasn't looking for that at the time either...). And, is there strawberry flavor? Pat seems to do well with strawberry so far...
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I don't think so Jamie...j4mie said:Question...
Can I buy the Boost VHC at a grocery store? I have seem Ensure, and I have seen Boost, but don't recall seeing Boost VHC (of course, I wasn't looking for that at the time either...). And, is there strawberry flavor? Pat seems to do well with strawberry so far...
I was ordering it from Amazon.com by the case. I think it was around $30. It was handy having it delivered to the door. I think it only comes in Vanilla (which in a short time will taste exactly like the strawberry
) 0 -
Very true about the taste...phrannie51 said:I don't think so Jamie...
I was ordering it from Amazon.com by the case. I think it was around $30. It was handy having it delivered to the door. I think it only comes in Vanilla (which in a short time will taste exactly like the strawberry
) 
I went out to the barn to see Vinnie and decided to stop in at a Walgreens down the street from him. I found some of the Boost Plus. It doesn't have 560 cal. but it has 320. It's a start until I can get some of the really fatening stuff delivered.
Thanks again!0 -
Strawberry milkshake :-)j4mie said:Very true about the taste...
I went out to the barn to see Vinnie and decided to stop in at a Walgreens down the street from him. I found some of the Boost Plus. It doesn't have 560 cal. but it has 320. It's a start until I can get some of the really fatening stuff delivered.
Thanks again!With the real ice cream :-). Extra cool whip please. I also endulged in a lot of soft scrammbled eggs. Peanut Butter seem to be a staple for me right outta the jar! I did have the boost on hand but stuck with my own protein shake...here was one of my favs called the green monster
1 cup of milk
1 banana or 1/2 of fruit of choice(strawberry of course for Jim)
1 tbsp of peanut butter or 10-15 almonds
1 cup of spinach (on the top of my gotta eat foods from my radiation nutrititionist) promise you don't taste spinahc
1 scoop of vanilla or chocolate protein powder
8 cubes of ice or to desired ththicknes
mix all ingredients in blender, ninja or mixer
i still enjoy this one and have been creative to add a different taste with fruits I could eat
also, I used silvadene ointment for the facial burns. It's a prescribed ointment but gives amazing relief.
know your in my prayers..both of you
christie
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Love the smoothie recipe!
Thank you Christie! If I can hide a bit of spinach in there without him knowing it, all the better
Jeff...Pat is a tried and true Redskins fan...I'm with Da Bears. You should have seen our house two weeks ago when they played eachother. It was very interesting when I had to admit defeat
LOL! Jamie
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Love the Smoothiej4mie said:Love the smoothie recipe!
Thank you Christie! If I can hide a bit of spinach in there without him knowing it, all the better
Jeff...Pat is a tried and true Redskins fan...I'm with Da Bears. You should have seen our house two weeks ago when they played eachother. It was very interesting when I had to admit defeat
LOL! Jamie
Jamie - Skins, Caps and Nats fans we are! - I am guessing I will be starting treatments in about 2 weeks so this is great information on nutrition - I do like spinach and welcome any additional information from others here on supplements and intake and regular feeding and hydration - I am practicing, I hope this does not sound ridiculous, but I am drinking water constantly to get use to doing this during and after treatment - is it easie with a straw, right now I am using a drinking bottle that I just keep filling and it has a big plastic straw in it.
Steve
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I think it's great!Steve5 said:Love the Smoothie
Jamie - Skins, Caps and Nats fans we are! - I am guessing I will be starting treatments in about 2 weeks so this is great information on nutrition - I do like spinach and welcome any additional information from others here on supplements and intake and regular feeding and hydration - I am practicing, I hope this does not sound ridiculous, but I am drinking water constantly to get use to doing this during and after treatment - is it easie with a straw, right now I am using a drinking bottle that I just keep filling and it has a big plastic straw in it.
Steve
I think it's great that you are going into this with such a pre-emptive attitude! I'm sure your attitude will serve you well when you get into the heart of your treatments.
I am a HUGE proponent of water. I don't think it is possible to overhydrate... I don't ever go anywhere without my trusty water bottle
Pat, on the other hand, has not been a huge water drinker until now. Before his mouth started to get dry he would forget to bring his water bottle with him and we/he would have to stop and buy water all the time. In response to this, I bought a case of water and just keep it in the backseat of the truck for him. We're in IL so the weather keeps it at just above room temp at this point...Jamie
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