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I'm new and about to start radiation.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Hi everyone, I just joined not too long ago and all of your discussions have been very helpful thus far! Well I was just diagnosed in April with SCC and had surgery to remove my orange sized tumor growing out of my neck. I was 7 months pregnant during the surgery and had to wait to deliver the baby to start my radiation. Last week they pulled out all my wisdom teeth and got me fitted for the mask they used during radiation so I'm just about ready to start. I'm set to do my first treatment Sep 7 and I will go for 7 weeks. I just wanted to ask if y'all had any helpful tips for me during the treatment? I have a 6 week old baby so I know I will probably be quite fatigued during this time due to no sleep at night lol. Any tips would be most appreciated! Thank you all and God bless.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

I don't know if this will halp much but when my husband was going for Radaition treatment they told him wash your face with anti bacterial soap before you come for treatment. So He would do this, his face got red but did not burn like some people did. So bet thing I can say make sure you do not have any kind of makeup or lotion on your face and neck. If you have to go into the bathroom before treatment to wash your face and neck do it.

Jennie

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

There is not much you can do to prepare. Keep an eye on your skin around the field of radiation. If it starts to burn there are prescription creams like Xclair that take the burn out and heal the skin. During treatment try to eat and drink as much as possible. I'm not sure if you have a feeding tube, but your jaw can tighten up quite a bit from not using it. If it starts to get tight stretch it by opening as wide as you can, you should feel a pull, hold for 10sec and then rest, repeat 10 times three times a day. Keep your mouth clean as possible, because radiation kills cells you want to protect your teeth and gums. Like you I had two wisdom teeth pulled and three molars before treatment. You can use standard mouth wash and tooth paste, but your mouth may get burned up. You want to look at Biotene products. They are very gentle and will allow you to keep your mouth clean. I had chemo and radiation at the same time, so I'm not sure how much energy you will have. I was dead tired every day. You can also mix 1tsp of baking soda and 1tsp of salt in 8oz glass of water to keep clean and fresh too.

Let us know how you progress and have any questions.

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

Sorry you have to deal with this, especially with a new baby!

Ask your radiation oncologist and nurse about possible senarios and monitor this site...it is a great place, with great people who have lots of knowledge and experience. Super glad you have great support, it's key. My wife drove me to every treatment...could not have done so myself after week two.

I had seven weeks of radiation along with seven once per week chemo treatments. Here, in a very small nutshell was my experience...I need to stress everyone is different regarding side affects. Here goes:

First two weeks, no problems. My docs said that would probably be the case.
Week three fatigue and pain were starting to set in. Skin was starting to get "tanned"...but red too. Nausea a problem...solved with Zofran.
Week four very tired, pain was ramping up. Skin starting to fry.
Week five through seven sleeping 16-20 hours per day. Pain managed with Lortab and fentanyl patches. Skin fryed, but used Eucerin cream and that worked well. Heavy duty mucositous...thick spit. It's not fun. Went through tons of Kleenex. Also, hair on the back of my neck at colar line fell out.

I did not have a PEG tube, drank Ensure & Boost almost around the clock as I awoke every hour - hour and a half. I lost 30 pounds.

Weeks one through three after treatment still a mess, sleeping less but pain still an issue.
At six weeks after treatment I had weaned off pain meds and was starting to eat soft foods.
Now almost 14 weeks after treatment I'm eating 95% of calories, drinking an Ensure once a day. Been back to work for about five weeks, two full time.

During this time I did the following:
Mouth & swallowing exercises, provided by rad nurse.
Used prescription high fluoride toothpaste (still do & will forever)
Mouth rinse with baking soda and salt
My rad doc really stayed on top of pain management
Got as much rest as possible, did'nt have much choice.
Prayed a lot. Recovery is not a day by day process, but week to week.

All the best to you during this difficult time, we are all here for you.
Keep posting and let us know how you are doing.

Chuck.

Noellesmom
Posts: 1291
Joined: Aug 2010

Kristyn,

Congratulations on your new baby! I'm glad you both came through what was certainly an eventful pregnancy!

My husband is finishing seven weeks of radiation and three rounds of chemo. He has actually had minimal effects from the treatment. I would say the greatest effect he had was the fatigue mainly from the anti-nausea and pain medications, although it is safe to say he is much more tired than he lets me know :)

I am concerned because you don't mention anyone who will be helping you with the baby and your housework during your treatments. Please be sure you will have someone who can help you during the treatment and for awhile afterward because I understand it takes some time to regain strength.

As for your skin: Jim has had good luck with the cream his radiation oncologist recommended - it is called "Udder Balm" and we bought it (a large jar) at Wal-Mart. I have spoken to others who said it worked well for them, too, with the main tip to use it, at a minimum, daily. Right now, Jim is using it twice a day. He does not have very fair skin so any ruddiness the treatment has caused is not really noticeable.

Hugs and good thoughts coming your way...

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Thank you all for the insight! I think I will be buying some cream asap! I'm scared about my neck getting irritated b/c my surgery wasn't that long ago and I still have a really long red scar that feels weird and I'm scared it'll hurt under the radiation! We will see though!
Noellesmom, I'm sorry I didn't mention my wonderful family! My husband, mother in law, mother, and aunt are all extremely helpful and will be there with me to help with the little ones. After my surgery my 3 year old was the biggest help of all! It was amazing seeing him act like such a big boy lol. My Oncologist says it could take up to 3 months to go back to normal after the treatments finish. My mom is so upset b/c they said everything will taste like cardboard for quite a while. She feels we must do Thanksgiving this weekend lol. I am so blessed to have people around who will help!
I am so sorry your husband had to go through Chemo as well as the radiation, I'm sure he's a very strong man! Where was your husband's radiation targetting? His neck as well? Do they always give you anti-nausea medication or is that b/c maybe his radiation was targetting a different area? Everything is so new to me I'm trying to find out as much as I can! Thanks again!

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi KristynRuth. I want to first say welcome to this forum and I feel for you. You have a lot of support at home and a lot of support here. What I am about to say assumes a lot and I'm sorry if what I say assumes too much. I offer these thoughts from the best place in my heart.

It's great that your 3-year-old was so helpful to you after surgery. What I thought of was the stage of development your son is in and what to expect from him as you enter treatment.

A 3-year-old is emerging from an infant stage into a toddler stage and is seeking independence. You have that working for you because he will likely enjoy the tasks you have for him to distract and keep him busy. I would caution however to not lose sight of what impact both the baby and your illness will have on him. When the baby was born was the last day he was #1 (from his perspective). He will have to contend with not only sharing attention with this new little bundle but also the scary aspect of mom's dwindling strength and ability to engage with him like he's been accustomed to.

I'd suggest making sure he has the space to get mad or sad or frustrated because his world will most likely be rocked by all this change. It is likely he may become scared as well because you will begin to become sicker (again from his perspective) and that is scary. He may need a lot of understanding and permission to say how he feels and perhaps even permission to act out appropriately (hitting pillows, tearing paper, drawing, etc.). If he's in day-care cluing the teacher in on what's happening at home should also help.

I'd suggest some children's books on subjects like parental illness (When Mommy is Sick is a good one - http://www.amazon.com/When-Mommy-Sick-Ferne-Sherkin-Langer/dp/0807588946), but also perhaps a book on parenting like Positive Discipline for Pre-Schoolers (http://www.amazon.com/Positive-Discipline-Preschoolers-Revised-Second/dp/0761515151/ref=sr_1_2?ie=UTF8&s=books&qid=1282617077&sr=1-2-spell) that may help the caregivers come from the same place (I assume with so much help he may be in the care of more than one person in a given week).

I hope you find this helpful.

Best,

Mick

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi again KristynRuth.

Your mom might be on to something. I am 5 months post treatment and still cannot swallow. It is possible I will miss Thanksgiving even though my treatment ended on April 1. If you had Thanksgiving now at least you can spend time with your family when you are more or less normal. I don't want to scare you but post-treatment is a crapshoot. Some here have been fine in about that timeframe (3 months) but others took longer, some very much longer, to recover. It is better, in my humble opinion, to prepare for a recovery that may take longer than your Dr anticipates. Your body will decide how much time it needs and often it goes against our deepest wishes to feel better sooner.

Best,

Mick

fisrpotpe's picture
fisrpotpe
Posts: 1330
Joined: Aug 2010

My first concern would be your immune system will go down during treatments, with not know where your child will be but they seem to carry anything they come in contact with. Try not to come in contact with other that are or have been sick. Wash, wash and wash more often.

No matter how bad it gets with your mouth and throat keep swallowing, this is an auto matic muscle reflex and if you loose this it is extremly hard to get back. Keep your mouth flexable as it starts to tighten up. Put thumb on from teeth and fingers on bottom teeth and spreed them like another person has already stated. Your neck will do the same for months to come. Keep streching left and right as far as you can along with the same up and down.

Accept help from any and all. Most believe they can do this by theirselfs and they might but it would be alot easier to use the help. By using the help others give that creates a smile on those caregivers as they feel they did something and that will keep them positive around you with their smile. Alowing others to help will be easier on your spouse and child.

Find that box of patience you have been storing for a rainy day, it will be needed. Do not be concerned about the first 2 weeks as it takes some time for most to feel some discomfort that is bad. It will seem like the treatments do not get done fast enough... but you will find out that the recovery will be even slower.

My doctor told me almost 15 years ago not that beating cancer is 60-70 percent Positive Mental Attitude ( PMA). Well I disagree with him, it is 75-80%. We all that have been thru this know you can whip Cancer's butt. If you know it and believe it you to Will Beat Cancer's Backside.

Beating cancer is like a huge War... their are daily battles that others help you get thru day by day and hour by hour, and this leads and adds up to winning your war against this ugly sickness.

Congrats! you are a survivor the day you were told you have cancer.

Postive Mental Attitude, Believing, Never Never Never give up and Keeping our Lord and
Savior with you all all the time, God Loves All. These are the four rules I used.

staceya's picture
staceya
Posts: 701
Joined: Jan 2010

I am SO glad to hear from you! I was wondering how you were doing!
Agree with all that's been posted. I think it is A GREAT idea to have Thanksgiving now.
I kind of did that with bacon, ate a whole lot while I could still taste it, people thought it was nuts! I called it pre rads bacon loading (kind of like carb loading for a marathon,which I certainly do not do, but should) I was SO afraid before starting, but everything worked out really well. This formum helped me the most of all. Get all the help that you can with the children, housework etc. You will be on my mind.
Stacey

timreichhart
Posts: 195
Joined: Aug 2010

Ask your doctor about these meds:
Diflucan 100mg tables to help not getting any fungal in the mouth and throat (if you get from your doctor make sure you take it during your radiation treatments)
triamcinolone acetonide cream
salagen 5MG to help with dry mouth and mucus that you may get
tessalon 100MG perles to help with cough
Ativan 1MG for nausea I recommend highly getting this med.
Fentanyl 25mcg/h patch for pain.
Also make sure you use Aloe with no alcohol and don't use (Aquaphor) because that crap made me so red and made the pain so much worst.
Also take prilosec otc because you may get heartburn from radiation.

you may or may not need these meds but ask you radiation doctor about them.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

You guys are so amazing, I'm literally wrtiting all this down. After I had my surgery I thought that was going to be the worst experience of my life, I couldn't swallow for what felt like forever and I was just miserable, so I can't imagine it will be worse than that. If there is anything else you would think will help me through the treatment I will appreciate the tips so so much!
Thank you thank you!!!

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Kristyn,

Not much to add advice-wise. But Congrats on your new baby!! Good luck with upcoming treatments and if I do have one piece of advice it's keep that positive attitude and laugh at everything you can. It helps a lot!

Greg

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Not much I can add to what folks here have posted, other than that Emend is a wonder drug when it comes to combating nausea (if you're going to have chemo) and that Biafine, a prescription lotion, really kept my neck from burning -- and I'm a very fair-skinned dude.
I hesitate to say that when it comes to not being able to swallow, you ain't seen nothing yet. Radiation is very much like the way Timothy Leary described LSD back in the '60s: "To those who've had the experience, no explanation is necessary. To those who haven't, none is possible."
But if you go into this with a positive attitude and avail yourself of all the educational resources available through your doctors and on this site, you'll do just fine. Radiation sucks big time, but this is what's going to save your life. It's a blessing -- but it sure won't seem so at the time.
And please, keep coming back here. You'll have plenty of questions as your treatment progresses, and this is a great place to get answers from those who've been there and done that.
God bless you, and good luck.

--Jim in Delaware

fisrpotpe's picture
fisrpotpe
Posts: 1330
Joined: Aug 2010

Attitude as those have shared since your last post today is without a doubt the second most important to Keeping Your Faith the God is there for You!

Hondo's picture
Hondo
Posts: 5717
Joined: Apr 2009

Looks like you got a lot of help already so I just want to say welcome here to our CSN Family

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Thank you everyone for all the help! Delaware, I really had no idea the swallowing issue was going to be that bad, but thank you for letting me know! I really really want to know, will I be able to keep working? I really want to keep working, because I have bills to pay and I just took off a lot of time after having my baby, I'm scared to take off another month or so. So did any of you continue to work through the therapy?

timreichhart
Posts: 195
Joined: Aug 2010

I have been off of work since 5-27 right after I started radiation because I didnt know how will I was going to react from radiation and as of today I am still off of work but I am on un-paid FMLA which I am about ready to run out so after that runs out I am going to apply for SSI for while intill I am good and heeled up.

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

I had seven weeks of radiation treatment with chemo, and the chemo set me back for sure.
I finished 4/30/2010.

I worked during the first three weeks of treatment and then had to stay home. I returned to work part-time ten weeks after treatment, full time at the eleven week mark...I've been back full time three weeks now.

I'm sorry, but for me it was tough...and I think I had it relatively easy compared to others here.

All the best to you, and everyone here.
Chuck.

rozaroo
Posts: 667
Joined: Apr 2010

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

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

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

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

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 Delaware

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

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!!

Mike

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

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.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

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.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

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.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

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!

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

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 :D

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Kristy,
If you want to you can email me when ever you want or need to just chat.
Jennie (Zinniemay)
woody@i2k.com

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

Thank you so much Zinnie, that means so much!

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

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.

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

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!

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

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, Steve

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

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?

rush1958's picture
rush1958
Posts: 197
Joined: Jul 2010

I haven't even attempted since being diagnosed in February.

Rush

Noellesmom
Posts: 1291
Joined: Aug 2010

I'm sure I'm not the only one wondering how you are doing - let us hear from you as soon as you feel up to it, KR!

greg from pa
Posts: 86
Joined: Jun 2010

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

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

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

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

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! :)

Charles

D-Byrd
Posts: 25
Joined: Aug 2010

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-Byrd

charles55's picture
charles55
Posts: 87
Joined: Aug 2010

Today is your first treatment. Good luck! It can wear you down at times. Keep your eye on the prize and don't let it go even for a moment.

team stevens
Posts: 46
Joined: Sep 2010

Hi, i'm sure you're resting after your 1st rad. my husband is now 6 wks out and we take one day at a time. still dealing with the thick saliva & some swelling in the treated area of neck. he also has a trech tube.that's great that you have so much support from your family, it'll make a world of difference. all of our fam is in florida & it was very hard on us going it alone, but God got us through & He'll do the same for you. don't be afraid to ask for help, or take it when offered. take in as many calories as possible. mike has a peg and we don't know when or if he'll be off of it, but he makes sure he doesn't miss a meal regardless of how he feels. i suggest that you meet with a nutritionist for advice, since you just had a baby, your dietary needs will be different than most. just know that you're not alone & you can do ALL things through Him that gives you strength.

love & prayers & keep posting

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

I was diagnosed with Nasopharyngeal Carcinoma Stage III before my youngest son turned 1yr old. I was told by my doctors to be careful being around my son because of my immune system. I was fortunate. I never got anything from him. However, I was not able to watch him on my own. I had no energy and was in a lot of pain from the radiation after about week 4. I have finished the radiation and the first 3 rounds of chemo about 6 weeks out now. I am about to start the last 3 rounds of chemo. Woo hoo! I will say this, for me the body has begun to heal quickly. There is a lot of good advise on this page. All of which i believe is true. You will find that in a few weeks, all of these kind people sharing their experience truly speak your language. Most people will not understand, but we do. I hope nothing but the best for you. It will be hard, but look at that young one and know that it's worth it to stay alive. You can survive, I believe that. Stay Positive and never give up hope!

Regards,

James

KristynRuth86's picture
KristynRuth86
Posts: 144
Joined: Aug 2010

I feel so blessed to have found this website, all of your advice means the world to me and I thank each one of you for taking time out to respond. I was supposed to start rad 9-7, but they recommended chemo now also and now I'm starting the chemo and rad together 9-9 (tomorrow) I'm nervous to say the least! Thank every single one of you again!

Noellesmom
Posts: 1291
Joined: Aug 2010

In spirit, KristynRuth. You will do well.

Make sure you give us a report!

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

After being in the delivery room during the birth of both of my children. You have endured far more pain and courage than I think I could...you can definitely handle this.

Best,
John

james chambliss's picture
james chambliss
Posts: 70
Joined: May 2010

You will get through this. It will be rough, but we are all here for you and we understand. That's what i love about this place. Everything i have gone through thus far, others have experienced and came out on the other side doing better. Which gives hope and hope Kristyn is important. Never give up!

James

luv4lacrosse's picture
luv4lacrosse
Posts: 1385
Joined: Jul 2010

Krystyn, I did my first radiation this morning. the had music playing and also layed warm sheets on me as my room was ice cold. About midway through the treatment, I felt like I could not fill my lungs with air. my breathing started to increase and I felt like I was hyperventilating. Once I slowed down and got my self back to my "happy place" I finished OK. I will most likely struggle with this for a few more times until I figure out how to "play the game".

I will be thinking of you tomorrow during my treatment and paraying that you make it through uneventfull.

BEST!!

Mike

CajunEagle's picture
CajunEagle
Posts: 358
Joined: Oct 2009

You might try thinking about bench pressing, or counting down till the end of the session. Personally, I played a different golf course (in my mind) when I was going through TOMO radiation. Some sessions, I would go fishing or maybe counting the number of rotations the machine would circumference my head. Every session would be 31 times (I'll never forget that number), but once it went 33 times, and I almost lost it. :) Towards the end, around sessions 29-37, I was such a basket case that I just fell asleep. Which if you can do it, is not a bad idea. Good Luck !!

Larry

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