I'm new and about to start radiation.
Comments
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Workrozaroo said:Krystin
Wellcome to our group! Allthough I am so sorry you have to go through this. You are young & strong & that is a huge bonus when it comes to this disease. Plus make sure to eat anything & everything you wish before starting your treatment. We are all here to help with great advice & genuine care. All of us respond to treatment differently, however, we can offer whatever seemed to make our journey through this a bit easier. God bless & I shall keep you & your family in my prayer's.
Roz
Mark went to work as much as possible. One day a week (Mondays) were treatment days when he was at the hospital all day, but he was doing chemo too.
At the hospital where Mark was treated one could schedule radiation treatments as early as 5:30 in the morning until 6:30 at night, to accomodate people's work schedules. Krystin, everybody's experience here is different. Mark had as much cut out surgically in the beginning, which made his radiation treatments less intense. He never lost the ability to swallow, and used his feeding tube for less than a week, and that was only to supplement through the last days of treatment. That doesn't mean it didn't suck...it really sucked and he still has issues, but today he is 5 weeks post treatment and his taste is coming back, he is gaining weight, and he has resumed a very normal schedule. This is his picture...taken at 4 weeks, 2 days post treatment. He is 54.
Going to work as much as possible is what kept him sane.
It is good to learn as much as you can so you can hope for the best and prepare for the worst.
We will help you all along the way.
Kim0 -
My work experienceKimba1505 said:Work
Mark went to work as much as possible. One day a week (Mondays) were treatment days when he was at the hospital all day, but he was doing chemo too.
At the hospital where Mark was treated one could schedule radiation treatments as early as 5:30 in the morning until 6:30 at night, to accomodate people's work schedules. Krystin, everybody's experience here is different. Mark had as much cut out surgically in the beginning, which made his radiation treatments less intense. He never lost the ability to swallow, and used his feeding tube for less than a week, and that was only to supplement through the last days of treatment. That doesn't mean it didn't suck...it really sucked and he still has issues, but today he is 5 weeks post treatment and his taste is coming back, he is gaining weight, and he has resumed a very normal schedule. This is his picture...taken at 4 weeks, 2 days post treatment. He is 54.
Going to work as much as possible is what kept him sane.
It is good to learn as much as you can so you can hope for the best and prepare for the worst.
We will help you all along the way.
Kim
I was diagnosed on June 23, 2008. My short-term disability kicked in immediately, even though I really didn't need more than a week to recover from the tonsillectomy. There was lag of about six weeks until I began treatment, and I didn't have to work -- so I figured, why bother? I was getting full pay, and this gave me an opportunity to work in the garden, get some stuff done around the house, practice the banjo and basically try to wrap my brain around the fact that my doc had told me I had a 50-50 chance of pulling through this.
Obviously, I could have worked during that period of time. My first two weeks of treatment -- chemo (Cisplatin) and rads -- went fine, and I thought to myself, hey, this is a breeze.
Then week three commenced, and I was down for the count. No way could I have worked, the way I felt. Dragged out, fatigued, cold, wanted to do nothing but sleep. And my throat was starting to hurt.
Add to it the fact that I couldn't get enough calories through my mouth, and I had to be hooked up to that stupid (but life-saving) PEG for hours at a time, work would have been out of the question.
Your mileage may vary, of course, and there've been people posting here who worked through it all. I'm no wimp, but there's no way I could have handled it.
--Jim in Delaware0 -
kristyn,
You didn't mention
kristyn,
You didn't mention chemo so the fatigue might not be as bad as could be. The radiation's outward effects don't show up for ten days to two weeks. During those first days, you will wonder what is the big deal. Then I would expect your mouth/throat/tongue to start hurting. Don't be shy/tough about using pain meds to deal with it. I am an Reg.Nurse who went through this. Pain starts a cascade of issues that gets in the way of cellular healing. If you start to get a dry mouth (likely, but depends on the exact treatment field), thrush gets to be a real threat. Use your miracle mouthwash several times a day.
I was too proud to allow a PEG tube early on, but I was a fool. So if your oncologist suggests it, please don't be afraid to accept. If your epiglottis is in the radiation treatment field, it will likely swell and not be able to properly seal off your trachea (windpipe), which will allow liquids/foods to aspiriate (get into) your lungs. You really need the nutrition because there is going to be whole bunch of healing needed. You will be needing lots of protein (at least 90grams/day), lots of calories (you won't hear that many times in your life), and lots of water.
If you can find a way to stay positive and not let this define your life, you will do well. For me staying at work did wonders to keep me stay focused. After a while, you just get tired of thinking about your cancer; you want just want to be normal, again. I missed about 1 1/2 weeks when the effects were the worst (about two-three weeks after the last treatment). Kristyn, you are going to make it through, just fine.0 -
GREAT ADVICEKimba1505 said:Stategies for getting through radiation:
Hi Kristy...
Congrats on the Baby Boy...he will keep you strong and motivated...and maybe a little pooped out too. Try to balance enjoying him and getting yourself through treatment.
Radiation tips:
Use L-glutimine. Mix it in anything you drink. 1 teaspoon twice a day.
Baking Soda and Salt Water: 1 teaspoon each to 2 qts water. Gargle as much as necessary.
Protect your teeth. If you haven't seen a dentist, do so, to get floride trays.
Drink lots of water (fluids - no caffiene). I think 64 oz. is recommended.
Get a good Aloe. Make sure it has no alcohol in it. Use it as much as necessary.
Get Aquaphor...it is a baby product, gooey, but helps your skin.
Keep swallowing.
Ask about getting the PEG tube...a feeding tube that many say saved thier lives.
Get a blender and start to figure out how to make high calorie, high nutrient shakes, that you can tolerate while you can still taste. After you lose your taste it doesn't matter so much. We used Ensure, Carnation Instant Breakfast and protein powders to get the calories and nutrients up.
When you wake in the night rinse and gargle with the baking soda and salt water. Keep a bowl by your bed for spitting.
Keep your body doing something active every day.
Keep your mind doing something active every day.
Get to know your radiation techs...you will be seeing a lot of them.
This is all I can think of now...good luck.
Stay connected,
Kim
Kim, allot of usefull info. here. I start my Radiation Sept. 8th. I have all of the same questions and for some reason I am way more nervous / worried about the side effects of Radiation/Chemo VS the multiple surgeries I just completed.
I have always used Protein Supplements being a powerlifter, but was told today to use pure Whey Protein and make certian there are NO L Chain Amino Acids in the product I am buying as they are hard on the Liver. The stuff i have been buying at my gym for years is loaded with L Chain Amino Acids. I just paid $65.00 for it and threw it in the trash tonight.
I also have a neighbot who is a dietician and she hooked my up with a product made by Carnation that has 560 Calories in an 8 ounce can. I mix this with milk and flavor it with Ovaltine. tastes great and has the right viscocity to make it easy to swallow.
I have done real well with the surgery and only lost maybe 15 lbs since this started. I fear that I will waste away with the Chemo and Radiation. Hopefully my body fights back strong and the side effects are kept to a minimum.
Best!!
Mike0 -
Thank you Charles, Icharles55 said:kristyn,
You didn't mention
kristyn,
You didn't mention chemo so the fatigue might not be as bad as could be. The radiation's outward effects don't show up for ten days to two weeks. During those first days, you will wonder what is the big deal. Then I would expect your mouth/throat/tongue to start hurting. Don't be shy/tough about using pain meds to deal with it. I am an Reg.Nurse who went through this. Pain starts a cascade of issues that gets in the way of cellular healing. If you start to get a dry mouth (likely, but depends on the exact treatment field), thrush gets to be a real threat. Use your miracle mouthwash several times a day.
I was too proud to allow a PEG tube early on, but I was a fool. So if your oncologist suggests it, please don't be afraid to accept. If your epiglottis is in the radiation treatment field, it will likely swell and not be able to properly seal off your trachea (windpipe), which will allow liquids/foods to aspiriate (get into) your lungs. You really need the nutrition because there is going to be whole bunch of healing needed. You will be needing lots of protein (at least 90grams/day), lots of calories (you won't hear that many times in your life), and lots of water.
If you can find a way to stay positive and not let this define your life, you will do well. For me staying at work did wonders to keep me stay focused. After a while, you just get tired of thinking about your cancer; you want just want to be normal, again. I missed about 1 1/2 weeks when the effects were the worst (about two-three weeks after the last treatment). Kristyn, you are going to make it through, just fine.
Thank you Charles, I appreciate the words of wisdom!
I have a problem of always wanting to be strong and not take help that is offered, so thank you for reccomending the PEG tube, I will take it!
Yes, fortunately I do not need Chemo as they do not know where my primary source of cancer is, they're doing what they think is best and just radiating the area where the tumor was.
When you say lots of calories, do you mean more than normal or do you mean don't try and diet? I've heard people tell me that the food will give you much needed energy.0 -
This is not the time toKristynRuth86 said:Thank you Charles, I
Thank you Charles, I appreciate the words of wisdom!
I have a problem of always wanting to be strong and not take help that is offered, so thank you for reccomending the PEG tube, I will take it!
Yes, fortunately I do not need Chemo as they do not know where my primary source of cancer is, they're doing what they think is best and just radiating the area where the tumor was.
When you say lots of calories, do you mean more than normal or do you mean don't try and diet? I've heard people tell me that the food will give you much needed energy.
This is not the time to diet. Your body will be going through a lot, so the more calories and nutrients you can get the better. Your body will be working over time to heal during and after radiation. Normal diet they say for adults is 2000 a day, so I think if you can do that, that is great. I was only able to do about 600-900 a day and lost way too much weight. I started at 277 and I'm now at 205, was just weighed this week at the doc's. I'm trying to gain some weight back.0 -
Oh ok, that's kinda what Ijohnlax38 said:This is not the time to
This is not the time to diet. Your body will be going through a lot, so the more calories and nutrients you can get the better. Your body will be working over time to heal during and after radiation. Normal diet they say for adults is 2000 a day, so I think if you can do that, that is great. I was only able to do about 600-900 a day and lost way too much weight. I started at 277 and I'm now at 205, was just weighed this week at the doc's. I'm trying to gain some weight back.
Oh ok, that's kinda what I wanted to know, since the recommended is 2000 should you just try and stay at that, or should you be trying to eat more than that? So that answers my question. Thanks, although I did just have a baby and could stand to drop a few pounds lol... I'm just kidding, thanks for the answer!0 -
I would say 2000 is good.KristynRuth86 said:Oh ok, that's kinda what I
Oh ok, that's kinda what I wanted to know, since the recommended is 2000 should you just try and stay at that, or should you be trying to eat more than that? So that answers my question. Thanks, although I did just have a baby and could stand to drop a few pounds lol... I'm just kidding, thanks for the answer!
I would say 2000 is good. Mention something to the Dr. next time you see him or her. I had a nutritionist assigned to me and she was always asking about food intake and then telling on me to the Dr. lol... My doctor always stressed the need to get as much calories and nutrients as possible. I'd say if you are able to eat 2000, a bit more won't hurt if you "splurge" on your good days
0 -
helloKristynRuth86 said:Oh ok, that's kinda what I
Oh ok, that's kinda what I wanted to know, since the recommended is 2000 should you just try and stay at that, or should you be trying to eat more than that? So that answers my question. Thanks, although I did just have a baby and could stand to drop a few pounds lol... I'm just kidding, thanks for the answer!
Kristy,
If you want to you can email me when ever you want or need to just chat.
Jennie (Zinniemay)
woody@i2k.com0 -
Thank you so much Zinnie,zinniemay said:hello
Kristy,
If you want to you can email me when ever you want or need to just chat.
Jennie (Zinniemay)
woody@i2k.com
Thank you so much Zinnie, that means so much!0 -
caloriesKristynRuth86 said:Thank you Charles, I
Thank you Charles, I appreciate the words of wisdom!
I have a problem of always wanting to be strong and not take help that is offered, so thank you for reccomending the PEG tube, I will take it!
Yes, fortunately I do not need Chemo as they do not know where my primary source of cancer is, they're doing what they think is best and just radiating the area where the tumor was.
When you say lots of calories, do you mean more than normal or do you mean don't try and diet? I've heard people tell me that the food will give you much needed energy.
If you maintain your usual calorie intake (~1800-2000) for women, you will probably lose weight. That would not be good. Your doctor can probably tell you better than me, but I would expect it to be something more in the 3000 calorie per day range, maybe more. We first use carbohydrates/sugars, then fats, and then proteins to produce energy. But there is no clean break between the three, and there is a lot of overlap. You cannot afford to be using up protein stores from muscle and organ tissue to supply all the big time cell regeneration that is needed. Fortunately, a lot of the liquid foods like Boost, Ensure, Carnation can get you there even if you have to give up solid foods for a while.
And don't forget the extra water. Your liver and kidneys will be working overtime to handle with all the by-products of cellular death and regeneration. Dealing with all this is can be so scary, but know that you WILL count this as a win in the end.0 -
Thank you so so much, that'scharles55 said:calories
If you maintain your usual calorie intake (~1800-2000) for women, you will probably lose weight. That would not be good. Your doctor can probably tell you better than me, but I would expect it to be something more in the 3000 calorie per day range, maybe more. We first use carbohydrates/sugars, then fats, and then proteins to produce energy. But there is no clean break between the three, and there is a lot of overlap. You cannot afford to be using up protein stores from muscle and organ tissue to supply all the big time cell regeneration that is needed. Fortunately, a lot of the liquid foods like Boost, Ensure, Carnation can get you there even if you have to give up solid foods for a while.
And don't forget the extra water. Your liver and kidneys will be working overtime to handle with all the by-products of cellular death and regeneration. Dealing with all this is can be so scary, but know that you WILL count this as a win in the end.
Thank you so so much, that's very helpful.
I wonder too, while you're on radiation do you have to stop drinking any alcohol? Not that I binge drink or anything lol, I just assume you would need to since like you said your liver is working extra hard.
I am just looking to be finished with all of this mess! I can't wait for 2011! I'll be ready for the new year when I am done and finished. I don't try to dwell on how I'll be feeling for the next few months (thought of course I do want to know) I'm trying to plan on all I'm going to do once I'm well!
Thank you so much for the tips and insight!0 -
KrystinKristynRuth86 said:Thank you so so much, that's
Thank you so so much, that's very helpful.
I wonder too, while you're on radiation do you have to stop drinking any alcohol? Not that I binge drink or anything lol, I just assume you would need to since like you said your liver is working extra hard.
I am just looking to be finished with all of this mess! I can't wait for 2011! I'll be ready for the new year when I am done and finished. I don't try to dwell on how I'll be feeling for the next few months (thought of course I do want to know) I'm trying to plan on all I'm going to do once I'm well!
Thank you so much for the tips and insight!
Keep your great attitude. Take CD's to the radiation treatments, I listened to good music on a boom box and it took me away from the treatment in my mind. The radiation kills cancer, more so than the chemo, and it builds in your body over time. So the first few days, weeks you'll be ok, but as it builds it will cause you alot of mucous and spitting. We all did it so don't feel bad, I went through a box of kleenex a day! Keep drinking water, water and more water. I got a PEG and it saved my life I believe. I could get 2000 calories a day easily while I was laying in bed or sitting in a chair. Eating will be the hardest part, so ask you dr about the PEG and get it in early, before you need it. It is very simple to use and if you have people to help you, you'll do fine with the treatments and the recovery. Help is a blessing, take all you can get.
We all want to wish you the best of luck. Pray and have friends pray for you to keep your spirits up and to heal you quickly.
As far as Alcohol, I think that will take care of itself. You won't want any and I don't think your Dr would recommend it as you body is going to be very busy with the cancer fight.
Keep your spirits up and come back often....these folks are great.
All the best, Steve0 -
drinking alcoholKristynRuth86 said:Thank you so so much, that's
Thank you so so much, that's very helpful.
I wonder too, while you're on radiation do you have to stop drinking any alcohol? Not that I binge drink or anything lol, I just assume you would need to since like you said your liver is working extra hard.
I am just looking to be finished with all of this mess! I can't wait for 2011! I'll be ready for the new year when I am done and finished. I don't try to dwell on how I'll be feeling for the next few months (thought of course I do want to know) I'm trying to plan on all I'm going to do once I'm well!
Thank you so much for the tips and insight!
You are right, alcohol is not recommended. All your resources need to go to healing. And I think Steve is correct, too. If your mouth is in the treatment field, it will get pretty sore and alcohol is going to hurt like heck. And if your epiglottis is involved, you stand a good chance of aspirating it into your lungs. Real, real bad. I had a friend tell me my PEG tube would be a freshman's dream for drinking booze. I didn't buy it.
I still cannot drink alcohol because it stings the heck out of my mouth (as do a lot things), and it has been three years post treatment.
That is an interesting question to pose to this Board: can you drink alcohol anymore?0 -
Drinkingcharles55 said:drinking alcohol
You are right, alcohol is not recommended. All your resources need to go to healing. And I think Steve is correct, too. If your mouth is in the treatment field, it will get pretty sore and alcohol is going to hurt like heck. And if your epiglottis is involved, you stand a good chance of aspirating it into your lungs. Real, real bad. I had a friend tell me my PEG tube would be a freshman's dream for drinking booze. I didn't buy it.
I still cannot drink alcohol because it stings the heck out of my mouth (as do a lot things), and it has been three years post treatment.
That is an interesting question to pose to this Board: can you drink alcohol anymore?
I haven't even attempted since being diagnosed in February.
Rush0 -
Hi and welcome back
sorry you find yourself needing this site, and congratulations in finding it.All the people here are great. They have helped me tremedously.I just finised chemo and Rad a week ago. This did not cause me alot of discomfort until just recently.(2-3 days post rad until present).The pain and discomfort and heavy pflem are managable with the pain meds and Capasol (a supersaturated calcium phosphate rinse). I also had ETHYOL injections during my RAD treatments in an attept to save my salivary glands. Some doctores don't recomend the ETHYOL because alot of people don't tolerate it well. God Bless ya and know that I will add you to my prayer list. take care ! Greg0 -
Ethyol ~ Amifostine ~ Work ~ Nutrition & Fatiguegreg from pa said:Hi and welcome back
sorry you find yourself needing this site, and congratulations in finding it.All the people here are great. They have helped me tremedously.I just finised chemo and Rad a week ago. This did not cause me alot of discomfort until just recently.(2-3 days post rad until present).The pain and discomfort and heavy pflem are managable with the pain meds and Capasol (a supersaturated calcium phosphate rinse). I also had ETHYOL injections during my RAD treatments in an attept to save my salivary glands. Some doctores don't recomend the ETHYOL because alot of people don't tolerate it well. God Bless ya and know that I will add you to my prayer list. take care ! Greg
I had the Amifostine Injections everyday just before radiation. Each injection was in my stomach..dry, itchy and I only mae 32 out of 35 before I started getting reactions. Mainly high fevers, once I stopped the injections, I made my last few rads.
My radiation MD also didn't endorse them, my chemo MD ordered them. I feel they helped as I never got the thick ropey phlegm I hear others had. I also have regained probably 80% of my salivary function, though it took nearly a year to do that.
As for the PEG, I didn't have one, but did have excess weight going in, so it wasn't an issue with me or my MD's. If they felt I needed one and recommended it, I would have had it.
My other advice, hang onto the liquid pain meds you should have gotten during your tonsils being removed, you'll need those and the magic mouth wash you should have gotten, or soon will.
Around the 4th week or rads, your throat will start getting pretty torn up both inside and out. This will last for a few weeks even after your last rad treatments.
During that seven weeks or so, I mainly survived on Ensure and jarred DelMonte Peaches. I would take a spoonful of liquid meds, drink a glass of water, an Ensure, eat a few peach slices, a dissolved Percocet in a little water, and another glass of water.
That was pretty much my schedule several times a day.
I had anything from liquid hydrocodone, magic mouth wash, percocets, oxicotin, and even liquid morphine (which I couldn't tolerate).
Also, I was pretty apprehensive about the mask. So the first few days I had Xanax, but they would zonk me out later in the day. So after the first two days, I'd pinch them in half. By the end of the first week, I was used to the routine and no longer needed them.
Work is an individual thing as all of this is, only you will make that decision after you start treatement and how you feel. Rest is very important as is hydration and taking in enough calories and nutrition. That is what mainly dictates your fatigue and endurance levels.
For me, I could maintain working from home as I only do primarily computer related work. But anything like lawn work or something requiring physical labor, would zap me pretty quickly.
Best to you and yours,
John0 -
Just wanted to say HI!Skiffin16 said:Ethyol ~ Amifostine ~ Work ~ Nutrition & Fatigue
I had the Amifostine Injections everyday just before radiation. Each injection was in my stomach..dry, itchy and I only mae 32 out of 35 before I started getting reactions. Mainly high fevers, once I stopped the injections, I made my last few rads.
My radiation MD also didn't endorse them, my chemo MD ordered them. I feel they helped as I never got the thick ropey phlegm I hear others had. I also have regained probably 80% of my salivary function, though it took nearly a year to do that.
As for the PEG, I didn't have one, but did have excess weight going in, so it wasn't an issue with me or my MD's. If they felt I needed one and recommended it, I would have had it.
My other advice, hang onto the liquid pain meds you should have gotten during your tonsils being removed, you'll need those and the magic mouth wash you should have gotten, or soon will.
Around the 4th week or rads, your throat will start getting pretty torn up both inside and out. This will last for a few weeks even after your last rad treatments.
During that seven weeks or so, I mainly survived on Ensure and jarred DelMonte Peaches. I would take a spoonful of liquid meds, drink a glass of water, an Ensure, eat a few peach slices, a dissolved Percocet in a little water, and another glass of water.
That was pretty much my schedule several times a day.
I had anything from liquid hydrocodone, magic mouth wash, percocets, oxicotin, and even liquid morphine (which I couldn't tolerate).
Also, I was pretty apprehensive about the mask. So the first few days I had Xanax, but they would zonk me out later in the day. So after the first two days, I'd pinch them in half. By the end of the first week, I was used to the routine and no longer needed them.
Work is an individual thing as all of this is, only you will make that decision after you start treatement and how you feel. Rest is very important as is hydration and taking in enough calories and nutrition. That is what mainly dictates your fatigue and endurance levels.
For me, I could maintain working from home as I only do primarily computer related work. But anything like lawn work or something requiring physical labor, would zap me pretty quickly.
Best to you and yours,
John
Sorry you had to join our growing Fraternity; but I am glad you found this site. It definitely helped me through treatment and is still helping during the post treatment phase!
Charles0 -
6 weeks out of rads and erbitux
Hi Kristy, I also had a knot removed on he left side of my neck along with a radical left neck disection. My first 2 weeks of radiation and erbitux was a breeze but then I lost my taste and developed sores in my mouth. The peg was advised for feeding and I took it for the calorie intake. Your doctor will advise you of several creams and oils that you will need to get through this. Magic mouth wash is one of the things that helped me through all of this along with the pain medicine and nausia meds.
Try to eat as much as you can by mouth until it does not work anymore then go full blast with the peg. I am still using the peg and getting 6 cans a day plus 2 liters of water. I did not mention that I had an unknown primary and both sides of my neck were radiated. This made it a little harder for me I think because I was getting 70 gray on my left side and 60 gray on my right.
You will be okay Kristy and I put my faith in the Lord and let him make the decisions for me. I also have a family that takes care of all the things I use to do and it makes it a lot easier to have loved ones around you through this tough time. I am retired and do not have to worry about work thing but I would imagine you would have to stay out of work for a bit until you get your strength back.
I hope everything goes good for you and these people here are so wonderful with thier advice on how to fight this monster. I am sorry for your pain but it sounds like you have a good family to help you beat this. Keep a good attitude and your head high and everything will work out for you. If I can do anything to help you out please feel free to ask. God Bless you all and I hope you all are doing well!!!
D-Byrd0
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