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Two and a half weeks in to radiation therepy...

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

And...he's still yelling at the TV when his football team messes up Tongue Out 

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...Embarassed

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

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

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

donfoo's picture
donfoo
Posts: 1192
Joined: Dec 2012

Sounds like things are going as well as to be expected and you have all your bases covered. Just keep on top of things as they crop up. 

CivilMatt's picture
CivilMatt
Posts: 2903
Joined: May 2012

 

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

 

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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 Tongue Out

Jamie

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

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

TracyLynn72's picture
TracyLynn72
Posts: 676
Joined: May 2013

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! 

jim and i's picture
jim and i
Posts: 1591
Joined: May 2011

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

debbiejeanne's picture
debbiejeanne
Posts: 2357
Joined: Jan 2010

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

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

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........

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

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

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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...

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

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 Laughing

http://www.amazon.com/s/ref=nb_sb_ss_i_2_9/180-1820276-8476020?url=search-alias%3Daps&field-keywords=boost%20vhc%20very%20high%20calorie%20complete%20nutritional%20drink&sprefix=Boost+VHC%2Caps%2C561

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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. Wink Thanks again!

Hummingbird3's picture
Hummingbird3
Posts: 67
Joined: Aug 2013

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

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

It could be worse...................if he was an Eagles fan.

Some type of high protein drink would help. I drank alot of ensure and smoothies.

      Jeff

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

Thank you Christie! If I can hide a bit of spinach in there without him knowing it, all the better Wink Wink 

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 Embarassed LOL! 

Jamie

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

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

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

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 Wink 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

phrannie51's picture
phrannie51
Posts: 3669
Joined: Mar 2012

practice does make perfect!! Laughing  I still can't remember to haul my bottle around with me....I'm famous for having to stop and buy a bottle along the way wherever I go....I have two one liter bottles I keep stratigically in my house...one by the computer, one by my recliner.....all others I've lost somewhere...leave them at where ever I went. 

I still have to get up and pee every night....not the 4 or 5 times I did during treatment, but I'm still sucking water down in a big way....after years of hardly ever drinking the stuff unless it was mixed in coffee, or pop, or tea.....but I was never seen just filling up a glass and drinking it.

p

CivilMatt's picture
CivilMatt
Posts: 2903
Joined: May 2012

Jamie,

If he is like I was, you could hide anything you want in my drink and I wouldn’t know or care.

Drinking lots of water is (maybe) the best advice I received from H&N central.  I was so concerned with swallowing; I felt it was the one thing I could control.  I drank so much water the neighbors were using me to put out small fires.

Today, my swallower is different from before, but it does the job very well.

Matt

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

I love your witty remarks!!! You get the award for making me laugh on a day when I really haven't felt like laughing much...Thank you Laughing

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

They wouldn't have had to use you as much if all of the chemo in your urine wasnt re-igniting the fires...

JG

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

Now Matt and you have me & Pat laughing! Laughter is the best medicine...right?!?! Laughing

CherieLW's picture
CherieLW
Posts: 420
Joined: May 2013

Jamie, I just watched my dad go through treatment and he finished as of July 25th of this year.  It is doable I promise although he may feel a little worse before he feels better.  I was so scared and nervous and just feeling like you so unsure about everything.  I don't think that's something anyone ever wants to go through!

Dad had sinus of the nasal cavity and in one lymph node.  He lost most of his taste by the 3rd week and before his last few treatments he was not eating so a feeding tube was put in.  That was so scary for me and my family, just the thought of it, but in reality it is not that bad.  Tracy, Phrannie and others on here have been really helpful with giving advice because they went through it themselves!  If not for the feeding tube, my dad would have been starving and dealing with lack of nutrition.  He did well with staying active part of the days all through treatment, even if it was an hour or so he would get out and do something.  He did sleep more though and have mucous build up, sore throat.  He lost a band of hair around the bottom from chemo.  He had 3 chemos and 35 rads.  Anyway, I just want to give you a little insight on what you can expect, not scare you!

A few weeks after treatment, dad tried to eat but could only taste very little.  He had problems chewing and swallowing with all the mucous and soreness.  I' would say the past 2 months he has really improved on eating, but still remains on the peg due to lack of apetite. He does really good with it though and it doesn't scare me anymore although I can't wait for it to be gone!  Dad got energy back pretty quickly although he does tire a lot easier now.  He's getting back to abi-normal as they say!  Even better nose, is all that nasty chemo and rads did its job and my dad is now cancer free!  So try to look at the positive side of all of this as hard as it is.  Hang in there and I'm praying for you guys!  Things will look up it just takes time!  Before you know it he will be done with treatments and hopefully get some news that his cancer has vanished!

j4mie's picture
j4mie
Posts: 218
Joined: Sep 2013

Thank you for your kind words and encouragement! One day at a time for sure...

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